Emma and Olivia's Journey

2011-03-14T20:50:00.000-07:00

I hate to say that it has been a long time....but it has been a LONG time since I've blogged. This has been a very, very busy last few months. We have all been sick and have had a lot of medical stuff. I don't even know where to start.

I'll just be random and write down the highlights or lowlights if you want to call them that....

Emma swallowed a quarter....who would have thought something that big could be in such a little body.
Olivia blames everybody for everything. From small things like "Did you poopy?" She replies, "No, Emma".....to "Are you growing? Your clothes are getting small"....She replies, "No, Loren growed". She is very funny!
Loren thinks that whenever daddy comes home he is going to bring donuts or cinnamon bread....all because we did it one time.
Alyssa and I share looks that we can read without saying a word - usually when one of the other kids does something crazy or says something silly.

Medically, we will find out about Emma's kidneys on April 20th. Otherwise, the main thing Emma has been battling is being sick for about two months. Just one thing after another. Pneumonia, bacterial pneumonia, colds, weight loss, fevers....just very frustrating. On a good note, we are seeing how strong her lungs have become. Most of these colds and lung issues would have easily landed her in the hospital last year for at least a week. This year, we are not needing the respiratory support. Very thankful for that.
Alyssa is doing well with her expander. We are looking at her bone graph surgery this summer. Sooner than I thought but it's gotta be done. We started patching and wearing a contact along with wearing new glasses. This is a last ditch effort. We are giving it our all....does not make it easy.

This week Mike and I are celebrating 9 years of marriage. It has been long in some ways and short in others. I think we have overcome many challenges we have faced and stayed strong in the middle of it.

I'm going to try and write more in here. I rarely have time these days to do anything but I'm going to try harder.

2010-11-17T11:51:00.000-08:00

I welcome life because it makes me feel human and yet it stresses me out. I like getting out of the house and going to things because I feel like I'm not shut up in a house and I actually have a life and yet, most things I do - stress me out. For example, Walmart shopping the other day, made me feel productive and it was nice to come out of my hole. But the part of Loren screaming and spitting all through Walmart was not so pleasant. Loren has just started her temper tantrum 3 year old phase. I love this girl and it is a good thing. : )

We visited my nephew in Cincinnati and ended up taking Loren to the ER for 8 stitches in her cheek - same cheek with the dog bite - she fell on a sharp object. Another reason, we need to stay home. She doesn't get hurt in our house, just ones in other states. : )

The twins are in their twin beds and are doing well. They have actually taken naps the past two days. We painted their room purple. Very fun!!!!

I really should be ironing right now but I'm not....(just thinking)

Alyssa is doing much better with her orthodontist appointments. She has her expander in now and has taken responsibility to make sure we tighten it and are on top of things. Now, we need to get back to patching her eyes. But she came up with a good "reward" system. If she wears it two hours a day for 7 days, she gets to go to ToysRUs. (We really need to budget in her reward systems).

She is doing very well in school. She had wonderful grades and has a really great teacher.

Loren is growing up fast. But you can't say anything about her being in school because she is not, she is in preschool. She will correct you in a heartbeat. She is in love with horses. She is currently wearing her outfit for the 3rd day now because it has horses all over it....yes, I will choose which battle I'm willing to fight and this is not one of them.

Emma is doing extremely well!!!! Her speech has taken off!!! We will be getting her hearing tested soon with a sedated hearing exam but I really think she is hearing. At least way better than before her surgeries. She is possibly done with physical therapy - we are currently reevaluating to see what the next step is. We are wondering if her eye is tracking. We have an appointment coming up to see what the doctor thinks.

Olivia is doing well - being loud and using a very whining, high pitched voice and saying "why?" ALL the time. She is a ham and loves attention.

Twins are destroying my room so I must go....augh!!!!

2010-10-13T17:05:00.001-07:00

So I started writing a post last week and ended up not publishing it....I was having a very down day and sometimes I just don't want to bring the whole world (whoever is reading this) down with me and I hate sounding like "Poor me". I know things could be a whole lot worse but it never diminishes the feelings I have and need to deal with. After riding the long wave of adrenaline through this summer of 5 surgeries and an MRI and starting orthodontics, I crashed and had to deal with all those emotions. I've learned and know that this is a part of it - being numb, anxious, going because there is no other way and then when all is said and done and people are healthy again - at that point, you deal with the emotions. Not fair, probably not the way to do it but I don't know that there is any other way. Especially when I have to hold it together for my daughter. I have to be strong for her.

So after lots of tears, I think I'm back on the up. Alyssa's MRI results came back and shows that she is mild and not yet severe and they think we have another year. She also does not have to go on medication, which was a possibility. I'm very thankful for this. I just could not throw this at her right now. She is at a very fragile point right now. We have been rubbing her scar some to break up the scar tissue. She has been wearing her contact to school and I was able to get the patch on tonight for about 2 hours. Baby steps but they feel like giant mountain steps. To ask her to wear her contact and patch is to ask her to give up her vision. She is doing very well in school. She loves her teacher and I'm so thankful for that. Her orthodontic work is hell....I'm not going to lie. She has been bleeding every time and I hate to see her go through this and I pray that it gets better. That is all I have to say about that. : )

Emma is doing well. I have no idea what she weighs or how she has grown. I need to get her in again but I've had to cancel the last few appointments because of scheduling conflicts. She is doing well in her physical therapy and speech therapy. I cancelled her music therapy. It was just one more thing on our plate and she didn't seem to be working on any one thing that was significant in my eyes. She kept getting annoyed and not cooperating after 10 minutes. Plus I work a lot with her on singing and motions, etc. Anyhow, it was just one thing I needed to cut.

She seems to be handling colds better. I think she has to have grown new lung tissue. I don't know how her ears are. She seems to be hearing better and talking more but we won't be able to do a sedated hearing exam for awhile...until her ear drum heals.

I think I've covered most areas. I'm hoping the next several months are down months for us. I mostly have to concentrate on Alyssa's eye and mouth.

Loren is loving preschool. She is learning a lot and I'm very thankful.

Olivia and Emma have hit the twos and are pretty much driving me crazy!!!! Both are into everything and testing me. If I survive this, I can survive anything. : )

Well, I just wanted to update this since it's been awhile. Thanks for all the love and support and prayers!!! They do more than you know!

2010-09-19T19:35:00.000-07:00

This is Alyssa's 1st day of 1st grade. She is beautiful!!!

I'm ready for things to slow down. Had a crazy week last week with Alyssa's MRI. It went well. It was a very long day! We didn't leave the hospital til 4:00 p.m. She required an adult dosage of drugs so it was harder to get out of her system. She missed school the next day because she was still achey and her stomach wasn't feeling right. We did do the Versaid (sp?), with numbing cream for her veins and an i.v. She prefers that for next time. She argued with me at first about all options. So then I stated that she had to do one but she could choose which one and she choose the i.v. instead of the mask. I carried her to the room and I put her in the arms of a nurse. They took her from there so I couldn't see if she was scared or traumatized and it was very hard on me. I went to get some food and a drink and lost it in the cafeteria in the middle of ordering my stuff. I put my wallet up beside my face to hide my tears and told the lady what else I wanted...it's a good thing it was in the hospital because they probably see it at least some. Complete breakdown....oh why couldn't it be in the bathroom? So I got back to the waiting room and got my composure and the nurse came out and told me how she did. She was only scared for a short time and then they were able to distract her. But she did fine. Her MRI took 2 1/2 hours. We might find out the results tomorrow. We'll see...I'm not really ready to find out if we are facing open heart surgery soon. I'm hoping I have more time.

Mike's grandmother passed away last night. It's been a long road and we know she is in heaven...still doesn't make it easy. We will be heading to IN tomorrow night. She was an amazing lady! We will miss her dearly!

Alyssa starts her orthodontic work tomorrow. She is scared it will hurt and she won't be able to eat or drink but I told her she could. We'll see how tomorrow goes.

Emma is dealing with siunitis with infections in both ears. Lovely! So we are trying to get that cleared up. I am hoping and praying for slower weeks to come. We need some down time.

I'll post when I know more.
Love,
me

2010-09-01T19:11:00.000-07:00

So I keep going back and forth whether to keep up this blog...my life feels crazy most of the time and usually I feel like I'm fighting to keep my head above water and not drown. Most of the time I can't remember what I've written in the previous blogs and yet I don't have time to go back and read them. It has been a crazy summer and I wish I could say that it is going to settle down for me to write more but I don't know that. I think it is also two sided - somewhat theraputic to talk about things and also very stressful to talk about these stresses. Interesting...So I guess for now, I will keep doing what I can. : )

My girls are growing up! Alyssa just started 1st grade. The first week was not good. She had a tummy ache every morning, didn't want to go and wouldn't eat breadfast. Once she realized it wasn't that much different from Kindergarten, she began to really enjoy it. She tends to always be scared of the unknown. Alyssa and all her cousins had the chance to go on a coast guard ship last month. She didn't want to go and cried and cried so she didn't go. Once her cousins came off safe, she cried because she wanted to go. Such a silly bug! Alyssa is the sweetest, most sensitive of my children. I adore her and think she is beautiful! She has an MRI September 15th. It will be the first time that she will get an i.v. without being masked or sedated first. It should be very interesting. This MRI will tell us if she is ready for her open heart surgery to replace her pulmonary valve. The x-ray and echocardiogram showed that her heart is enlarged significantly more. The MRI will show an exact measurement. I am nervous to do this. I'm not ready to go through such a big surgery. But I know it will be soon. The more she grows, the more her heart holds too much blood and stretches. We can't let that be stretched too much for too long. Alyssa also starts her orthodontic work this month. We will start with an expander and then progress to braces and headgear. All this will lead to a bone graph surgery taking bone out of her hip and putting it in her gums. They will also do any orthodontic work while doing the bone graph...taking out extra teeth, moving things around, etc. Thankfully, she is looking forward to the braces part of it. She really wants her teeth to be pretty and straight. As far as her eyes go, she is wearing her contact to school but patching is very limited. She is very smart and does very well in school. I'm so proud of her!!

Loren is starting preschool next week. She is very excited and has been putting on her shoes everyday since Alyssa has started and cries when she hears that her school doesn't start yet. She is at a very cute age. She says all her c's and k's with t's. So she said "Mommy, tan we eat tomorrow?" and yesterday she said, "Mommy, tan we please go to bed?" She is trying very hard to be a big girl - wiping after peeing and washing her hands. Those are big things for her! : )

Emma is doing incredibly!!! I can't complain. She has been through 5 surgeries on her ears. She seems to be hearing a lot better. Her speech has improved by leaps and bounds. She still has a ways to go but has come a long way in a short time!! Her physical therapist said she is walking more flat footed now and that is great! She is very happy with her improvement since her last evaluation. And that is without therapy. We have to go in and remove her packing next Thursday. I'm anxious to see if she can hear any more. We will also be doing a sedated hearing exam to see if the surgeries show any improvement. I'll be anxious to see those results. Overall, she has just come out of her shell more than ever.

Olivia - what a character!!!! She talks bigger than she is. She is very sweet! Her and Emma's favorite thing now is singing the itsy bitsy spider. They do the motions and they want it sang over and over and over and over...get the point. : )

I'm doing well, I think. I've been more emotional this summer and I'm pretty sure it is because of all the surgeries. If I can stick to a regular exercise routine I think a lot of my stress will be dealt with that way. I'm trying to sit more and play more with my kids. I'm not stressing as much about what isn't being done and just trying to enjoy this time. Sometimes I think if time would just pass, life will get easier. In some ways, yes but it will also be hard in some ways too.

I'm thankful for Mike and his job. I'm thankful for medical people and the abilities God has give them. I'm thankful for wonderful parents and in-laws that support us. I'm thankful for our families that love us. I'm thankful for our children and hope that we do the best job of raising them. I'm thankful that God always knows what I need and can carry me through all that comes my way.

2010-07-27T15:58:00.000-07:00

I'm completely wiped out and Olivia is in her bed screaming at me so I shouldn't write long. It has been a crazy summer! Ups and downs for sure...

Emma is going in Friday to remove the packing in her ear. It will be a short 15 minute surgery but it will be in the operating room. Her biopsy came back and there is no cancer. They were very baffled by the tissue but they seem to think they know what it is and it was good they removed and might have less a chance of coming back. Her next surgery for the other ear is scheduled for August 19th.

We took Emma to the emergency room Sunday night. She was just struggling to breath - she had a cold - and needed a little help from her friend - oxygen. We were in the ER til 1:00 a.m. then admitted. We were discharged the next day. I came home to Loren bawling because she said her ear hurts. So off I took the kids to the doctor and she had really bad ear infections in both ears. So as of today I think we are on the upswing.

Loren's face is healing. I know the scars should look better over time.

Alyssa is going to have an MRI. The doctor thinks it might be time for her open heart surgery to replace her pulmonary valve. The x-ray showed her heart is enlarged more and they can't let it go too long being too big. It will stretch out her muscle wall so much that it won't bounce back and they need it too. So the MRI will tell us exactly how big it is and then we will decide. The one day I dread more than any other is telling Alyssa she needs open heart surgery. Not sure how I'm going to go about that one.

So that is where we are and I need to get off of here and take care of my littles.

Thanks for hanging in there with me through the lack of writing and posting pictures. Once school starts I might have some more down time to update. We'll see...: )

2010-07-16T19:07:00.000-07:00

Emma had surgery in July on her right ear. The four hour surgery ended with the doctor coming out and saying that they removed tissue but they don't know what it is. They sent it to the lab and have gotten back the pathology reports. The nurse called today and said they can't tell us the news, the doctor has to and he is on vacation for another week and a half. So she was going to see if the other doctor in the practice could let us know on Monday. He is Alyssa's doctor and knows us well so hopefully we can get a report on Emma's surgery and hearing exam and get a report on Olivia's CTscan. Emma seems to be healing well. It's over a week and she is still draining blood from her ear. Today she was holding her ear and kind of pouting. After that it started draining again.

Loren got bit by a dog last weekend in the face and had stitches in two different places and they glued the 3rd spot. She is doing fairly well but needing extra attention. I think we'll be dealing with some scars but only time will tell.

Alyssa had her chest x-ray, echocardiogram and dr. visit with the cardiologist today. Her heart is enlarged more. They want to do a MRI as that is the most accurate way to measure how big her heart has gotten. The concern is as her heart takes on more blood and that chamber walls increases to hold the blood, they don't want that wall expanded too much for too long. Like a rubberband they want that wall to bounce back. But if it is expanded too much for too long, it might not have that elasticity. So a MRI will let us know if we need to start the pulmonary valve replacement process. We will be getting a call from the scheduler on the that date.

I think I covered all four kids this time. : )

Emma is walking everywhere and climbing everything. She walks a little more on her toes so she will be starting physical therapy. She is starting music therapy and is already in speech therapy.

Emma got an owie on her leg the other day...so she sat down and lifted her leg and she kissed it herself, got up and walked away.
Olivia and Loren were playing with a ball and Loren took it away from Olivia. Emma stood observing from a few steps behind. After she stood there, watched and thought...she walked over to Loren and hit her on the head, turned and walked away. It was hilarious!!!

Olivia likes to throw tantrums and can be a handful and yet is the funniest, snuggly person.

Alyssa is getting so tall and is so grown up. I can't believe she is starting 1st grade.

Loren is cute and she knows it. She talks like she has an accent, especially with the word "not". All her c's or k's are spoken as t's. So she says, "Tan you tiss me?" Then I kiss her and then she says, "Don't tiss my nose" and giggles and smiles. Such a cutie!

2010-06-20T19:54:00.000-07:00

Wow! Has it been this long??? Since I have written last, Mike and I and my parents, my siblings and their spouses all went on a cruise to Bermuda. It was beautiful!!! The beach was fabulous!!!! Swimming in the ocean was wonderful and I'm not usually a fan of the ocean. Loved it!!!! Had some really good meal times with the fam and had some good laughs...made some memories...especially taking pictures in our red outfits. I would tell you but you would probably have to be there to think it was funny. : ) We took no children and that was very nice. I would have been too concerned of them jumping overboard and instead of 20 people telling me I had my hands full, I would have had 3,500 people telling me that. Mike's parents and my cousin, Jennifer and her daughters, Lauren and Renee, watched them the kids. I think they had a pretty good time too.

We started speech therapy last week with Emma. We still don't know if she has any hearing loss. We have a sedated hearing exam scheduled for the end of this month so that will tell us if she needs any amplification with her therapy. Olivia goes to the ENT tomorrow to get a CTscan scheduled to see if she has any cholesteatomas in her ears/head. Emma's 1st surgery is scheduled for July 8th. It will take 4 hours. She should be starting physical therapy soon but I'm still waiting to get that set up.

Alyssa has her heart appointment scheduled mid-July - x-ray and echocardiogram. I am always anxious to hear how her heart is doing. I think her energy runs out faster and she needs to catch her breath more often but she still has enough energy that other people don't see what I see. Her heart is enlarged which is crowding her lungs which would make it a little harder to breathe. Last year she would run around the block with me (1/2 mile) and run most of it. Now she runs about 20 feet, bends over, catches her breathe and then will either run or walk a little more and repeat it. Last year she would walk but never bend over. So we'll see...I always get anxious because I know I will dread the day that he says it is time to do open heart surgery to replace her pulmonary valve.

Emma has really come out of her shell and taken off now that she can hear (since her surgery in late February). She is babbling a lot! She is up to about 4 words. She is delayed about 54%. Most of that is because of the thick fluid that has kept her from hearing for almost 2 years of her life. I think she will continue to take off and improve just with time. What better therapy than having 3 sisters who don't ever stop talking. : )

Well, I'm going to post some pictures. Enjoy!

2010-05-25T17:40:00.000-07:00

The picture of Olivia with the diaper is funny because I wasn't planning on her getting in the pool so she had on a regular diaper and it of course filled with so much water and she kept grabbing at it because it was so uncomfortable. It was very funny to watch her!

Quick update...

Emma will be having two surgeries. Her first ear surgery will be July 8th. We are not sure when the second will be. They are 4 hour surgeries per ear.

Emma weighed in today at 17 lb. 12.5 oz. Olivia was 25 lb. They are both doing fine. We will continue to have Emma seen every 3 months. We won't have Olivia seen for another year.

Things are going well and the kids are growing and loving playing together. Enjoy the pictures!!!

2010-05-18T04:06:00.000-07:00

Hello!! Yes, I'm still here...just too busy to really show it. : )
Actually I'm too busy cleaning up poop and pee to really blog. That is not a joke! I wish it were. The twins lately especially think that getting in bed means stripping naked and then of course peeing everywhere or taking off their diaper and flinging, smearing poop everywhere!!! Aughhh!! And then Loren is wanting more attention. Even though she has been potty trained for a long time....she now needs me to drop everything and take her potty as she is doing the potty dance. So if she waits too long or I take too long stopping what I'm doing, pee everywhere ...even one foot from the toilet. Oh...this too shall pass....

Medically we are doing pretty good. I did take Emma in to a prompt care in IN for an ear infection. Then the next night took her into the ER in Peoria because she cut her lip pretty good on the inside. One doctor was going to do something with it and the next doctor said let's not. But they did listen to her lungs and heard some wheezing and stuff in her right lung so we did x-rays. Nothing bad so they just sent her home on breathing treatments. She seems to be doing well.

This morning is her ear appointment. We had a CTscan on April 23rd. They did call and the results showed something but they couldn't discuss it over the phone....not really what you want to hear....but we have to come in and discuss our options. So whatever that means, we'll find out this morning. If I had to guess, probably surgery but we won't know until we hear what he has to say.

I'll blog afterwards and let you know. Need to get going but I'll be back.

I know it has been FOREVER...

2010-04-26T19:42:00.000-07:00

Here I am finally posting.... : )

Thanks for hanging in there. We spoke at church two weekends ago for the first time about our journey. It was a hard week preparing for it. It brought up a lot of emotions and hard times. But it was so good to go back and think about everything we learned through it. If you want to hear it, here is the link. http://greatoakscc.org/
click on message player and the message is titled Hope:Destinations. It is about 43 minutes long. It was very hard to put into words what we learned and to take 8 years and minimize it into about 20 minutes. I hope that it touches even one person. We want good to come out of the pain that we went through.

I can't believe Loren just turned 3 and the twins will be 2 in May!!! I'm still amazed! Emma is doing really well. She has started to say a few words since they did surgery on her ears. She is walking well and seems to think she is way bigger than she is. Olivia likes to sit on Emma's back and Emma just laughs and laughs. Today I told the girls they needed to come...so Emma turns around and goes behind Olivia and starts pushing her to come. She really is a stitch. : )

The only update right now is that Emma had a CTscan on Friday. Mike took her. It was really nice that I did not have to do another round on my own. They had to sedate her so Mike was great with her. He came home and made mention of how draining the hospital is. Even for an appointment, it is draining. We haven't heard the results yet. Either there is infections in her bone mast and ear drums and we will need to do surgery or she is clear from any internal infections and we are good to go. We'll see. I'll probably call tomorrow to see if they have heard yet.

We are starting therapy in June for Emma. Occupational, speech and physical therapy. We will go to Easter Seals every week for this. Me and all my kids. Should be fun. : )

Enjoy the pictures I've posted. They are of Easter.

2010-03-25T10:44:00.000-07:00

I haven't updated very much lately and I do need to get my camera going again. Doctors appointments seem to be slowing down but I seem to be getting busier. I think a lot of it is this stage we are at with Emma and Olivia. They want to be held ALL the time and I'm not allowed to sit down....I must be standing up holding both. Boy, do my arms hurt? : ) I hope this stage will pass soon but we'll see. Emma is growing strong. She is up to 16 lb. 10 oz. so I am thrilled. We have her on plain whole milk right now. Olivia weighs 25 lb. 6 oz. Emma is walking around like crazy which I love to see. I hope she starts talking a lot more here soon. We will probably go ahead and start speech therapy soon.

I can't write long but I will hopefully get some more blogs and pictures up soon.

Doing well...

2010-03-17T07:58:00.000-07:00

Everyone seems to be doing well here. Some snotty noses but overall good. We went to Emma's pulmonologist last week. We waited for 2 1/2 hours before we were seen but when you've hauled all the kids and waited that long, you just can't leave. Olivia snuck a crayon out of the lobby and took it back and colored (red) all over their office floor. So she probably was paying them back.
Anyway, it was a very good conversation and I feel like we've touched bases and established him as her lung specialist. So next time she is in the hospital with another lung issue, I can have them contact him to come see her and that makes me feel good. This last time around was pretty frustrating in there.
He also said to stop the treatments - they weren't doing any good for the condition she has. That was music to my ears. Trying to hold down a strong girl and get her to breathe that stuff in is trying to accomplish the impossible. Now we will still do the albuteral treatments when she gets sick. But I can handle that. She is holding steady at 16 lbs. He said a lot of her size issues are due to the TTTS. I've, since then, have been researching the long term effects of TTTS. I'm hoping to understand things a litle more.

We have recently done the older girls room. Enjoy the pictures!

2010-03-09T15:54:00.000-08:00

Emma had her ENT appointment today. There were no new cholesteatomas so that is good news. There is no fluid so that is great too. So we will be doing a CTscan soon and we will go from there depending on what the results are. I'll go into details once I know results. It could anything from good news, to monitoring to surgery. Any of those three. I'm hoping for the good news. : )

Emma is walking everywhere and doing really well. Her weight is only 16 lbs. and Olivia is 25 lbs. We are almost out of the formula so I'm trying to decide where to go from here. I'm looking into pediasure so I think that will probably be our next route. High calorie and it would be all liquid which she is more into now. I'm looking to find coupons because it is expensive. If anyone knows where to get coupons, please let me know.

Loren is potty-trained which is wonderful!!!! One less in diapers. Two more to go. : )

We are slowing down with our medical issues at this point. I'm glad for the break. I won't completely be able to breathe until we find out about Emma's ears but after that we should have a break. Alyssa will start her orthodontics this summer. She will have a spacer put in to start spreading out her upper jaw/mouth to prepare her for her bone graph in a year or two. They will take bone out of her hip and put it in her upper gums. We are going to check up with the plastic surgeon but I think we will be taking a break. If anything I will see if there is a surgery they can combine with her bone graph.

Alyssa's eye is showing improvement with the contact. So that is now our focus where she will be wearing her contact to school on some days. It seems to be helping even when we don't patch.

I'm hopeful for a relaxing summer. It has been a crazy couple of months and I'm looking forward to some down time.

Thanks for all the support and encouragment! We always cherish that!!!

2010-03-03T07:10:00.001-08:00

I cut the girls mullets off. I'm feeling better...just had to get out there and exercise some of the stress off. Emma is doing very well. I was very excited to see that Emma has all her 2 year mollars and Olivia doesn't have any. It was just cool because it was the first thing that Emma is ahead in so that was cool! Olivia is cutting hers and she is not a happy camper. Enjoy the pictures!

Dealing with the stress...

2010-02-26T12:43:00.000-08:00

Once again, here we are, and Emma is doing great and I find myself picking up my pieces or at least trying to. This last episode in the hospital, with Emma's lungs starting to collapse, really scared me. On Saturday, I thought we could loose her. I mean these two little pieces of her body that were supposed to work weren't working....they were shutting down. Now she is doing great and I find myself a mess. I know this is usually how it works but I'm still not used to it. The adrenaline carries you through, then she gets better and you crash. I'm hoping this "down" time isn't too long. Her surgery went well and she is really thriving. Her sats yesterday before surgery were fabulous...between 96 and 100. That is really good! I think today her walking is more steady and she is babbling more. She seems much happier! I'm so grateful for her doctors and nurses! Her pediatrician is incredible and is the one that found this problem with her ears. If it were missed, the growth/infections could have eaten her ear drums and left her with no hearing. We are so very grateful. God seems to always have a plan and put stuff in our paths that we could have easily missed had His hands not been guiding us. We are very grateful to God that we are still holding our baby girl!!! She is a blessing to us!

2010-02-25T14:26:00.000-08:00

Emma's surgery went very well. They removed 4 cholesteatomas from her ears along with very thick fluid. Some of the thickest he had seen. He also put tubes in. She is doing very well with the help of Tylenol. Hopefully we'll see an increase in her verbal development now that she can hear. Enjoy the pictures!!! The bottom one - she is riding in the wagon waiting to go back to surgery.

2010-02-24T07:44:00.000-08:00

We have to arrive for Emma's surgery at 8:15 a.m. I'll let you all know when we are done and how things went.

Evidence that she does eat...

2010-02-23T08:56:00.000-08:00

Checkup

2010-02-18T18:21:00.000-08:00

Emma had a check up on Monday. She sounds good and weighs 15 lb. 15 oz. She is doing really well and is a very sweet girl! She will be having ear surgery next Thursday, February 25th. They will be getting rid of her Keratin Pearls and will also be placing tubes to get rid of the fluid. Unfortunately, we have to do things a little backwards. We need a CTscan to know the extent of the surgery but as long as she has fluid they can not get a good read as to how extensive the keratin pearls are. So the only way we can do it is the way we are doing it. Which only means, that we might have to have another surgery once we can get a CTscan if the Pearls go into her bone mast or beyond the middle ear. It's complicated but we have no other options. And the first surgery should not be a big deal so that is good.

Other than that, we are just winding down from everything being in the hospital. I hope I regain some energy soon. : )

Please keep my friend, Megan, in your prayers. She is getting a new heart as we speak. It is from an 18 year old so I'm sure there is heartache there too. We need Megan's new heart to work and for her body to accept it. They said they usually know within 24 hours. Thanks!!!

2010-02-14T15:49:00.000-08:00

Emma is home now and doing great!!! Thanks for all the prayers! She did have pneumonia in both lungs and bronchialitis. Doing great now! Enjoy the video!

Much better...

2010-02-12T19:15:00.000-08:00

Emma is off of oxygen. What a week this has been!!! It has been extremely difficult and trying and I'm glad it is almost over. She will probably be coming home tomorrow. Yesterday, things were not looking good. We discussed giving her one more day and restarting lasix and then if no change we would start steroids. But with a few changes that morning - a new cannula and Emma's 4th feeding tube coming out, she improved tremendously. She fell asleep in my arms and for two hours I stood holding her watching her sats and timing how long she was satting 99/100. The nurse was great and kept weaning her down. My arm hurt so much but there was no way I was going to move and chance waking her up. In two hours, Emma went from 8 liters of oxygen down to 2 liters. Overnight she was weaned down to 1/4 liter. This morning we weaned her the rest of the way off. The doctor said her lungs were very clear with no crackling sounds. We are so thankful she has pulled through. Thanks for all the support! I'm very tired and need some time to recoup but I don't know if that is going to happen. : ) Hopefully she'll be home tomorrow. Thanks again for all the prayers!

The same...

2010-02-10T19:16:00.000-08:00

Not much to say...there is no change. She was in better spirits towards the end of the day though. She would throw her toys on the floor and watch daddy pick them up. I know I got a lot of pleasure watching that one. : )
I hope to see some improvement soon. 7 liters of oxygen at 90% is not good. We can't let her lungs get damaged worse than they are. I have some questions for the dr. tomorrow about some options...please pray that we know what to do.
I feel better after a very stressful day. I was able to talk with some good friends to help me with some of the issues I've been having and I do feel better. I hate to vent frustrations out on other people but it does help just to be heard. Please keep praying that Emma's lungs will heal. I'm getting concerned as the days go by that there is no improvement.

Step back...

2010-02-09T18:40:00.000-08:00

We started the day improving on oxygen...then it went downhill. She is not happy and that is hard on me and then I feel guilty for feeling that way. I'm tired and frustrated. I've broken down several times today. She is very frustrated going 5 days without eating and not feeling well. I can't blame her. I just wish I could feed her. They suctioned out one of her lungs today...it had blood in it. I don't know if that set her back or if they turned down the oxygen too much and it sent her back up...I don't know. And there is nothing I can do about it. I hope tomorrow is a better day.

quick post...

2010-02-08T18:49:00.000-08:00

Quick post because I'm exhausted...

Emma is holding about the same today. We had a rough day of a girl not feeling so hot. She is hungry...I can't even drink a water in front of her without her throwing a fit. I can't even put her down so I can eat because I can't eat in front of her...it is too much torture. Anyway...they put in a NG tube (to feed her) at 11:00 a.m. They took an x-ray. It wasn't positioned where they wanted so they came back and redid it. Then we had to wait on another x-ray. So we were able to start the continuous feed at 6:00 p.m. The bad thing is they are bypassing her gut and going straight to her intestines because of the type of respiratory support she is on so bottom line - she is still hungry. The good thing is she is on pediasure which is 30 calories vs. my 22 calorie Enfacare. So that is a good thing. I would LOVE it if they could put some weight on her. However, she'll probably just be making up the weight she has lost since she has been here with the 4 days of not eating. Oh well, at least we are turned around in this area.

They stopped her respiratory therapy. They felt like it was irritating her. I personally think it is helping her but I do it during the day so I don't feel that she needs any more. She loves it when I do it and I think it is breaking up a lot of the crap in her lungs.

Emma is still on 8 liters of oxygen so we'll see what the night brings us. It is just going to take time for her lungs to shake this. She is not as labored and that is good. Her respiratory rates were very high yesterday and before ...like above 80 breaths a minute. They should be 20-40. Today they were pretty well under 60 so that is better.

I need sleep so I'm going to sign off now. Thanks for everything!!! I'm sorry I'm not returning every call and text but I do appreciate them all. Love you!!!!
Bethany

Emma...Emma...Emma......

2010-02-07T19:23:00.000-08:00

So all this started very minor and quickly...
Wednesday Emma had just a little runny nose and a tiny cough...no big deal. And nothing consistent. She was wheezing a tiny bit so I was giving her her breathing treatments which is also a stimulant. So afterwards she was just playing and playing. Not lethargic by any means. Thursday night I noticed her retracting a little bit - she had her shirt off and when she breathed her skin went in between her ribs. So I gave her another treatment and then another one in the morning. But it was still knawing at me. So I called the dr. and she wasn't going to be in til the afternoon so they told me to go to the ER. I didn't think she was that bad but I took her in. They did an x-ray and by that time she had a temp of 101. At that time, they told me she had pneumonia in both lungs and they were going to admit her. Later I was told that pneumonia is usually in a more concentrated area and Emma's was not. Emma's was all over both sides - very cloudy and wet. So they are now calling it broncialitis. The dr. explained to me that this is just a common cold to people but to Emma - with her lungs and history - not the case. I went in on Saturday and she was so much worse. I watched her work so hard to breathe...by far the scariest thing I've seen. Her oxygen went from 1/4 liter to 4 liters over the next couple of hours. It just kept getting worse and worse. They ordered another x-ray and it was showing parts of her lungs sticking together/collapsing. They wanted her to be under more critical watch so she got transferred to the PICU. That day just got worse. By the time Mike came Saturday night, he couldn't believe she had been like that all day. I was breaking down so Mike wanted me to eat dinner in the cafeteria with him. I could not leave her when she was struggling so much. But the nurses stepped up and said they would make sure she was o.k. We ate and I cried. The helpless feeling of not being able to fix it. No antibiotics were going to fix this. She just had to wait it out and hope for the best. When we got back, the nurse had spent a half an hour with her and couldn't believe how bad she had gotten. By the time we got back, they had made several changes. One of them was to put her on a high flow cannula. This forces the air much faster and would hopefully open her lungs back up. So she was moved up to 8 liters of oxygen and 50%. She was in better spirits. The down side is she can't eat with a high flow cannula. So that much needed weight is now melting off her body. It's now 3 days, no food or drink and she is not happy about that. If she does not improve enough to get off of the high flow cannula by tomorrow, they will put an NG tube in and feed her through that. She won't like it but it will make her feel full and she will be getting the nutrition and hopefully not loose too much more weight. So that is where we are now. She will be in the hospital at least this whole week. We need her to turn the corner and start getting better. Right now she is holding steady and not getting worse. Thank you for your prayers!!! Thank you for all the offers to watch my little ones. I'm so very tired and drained. I must get some sleep tonight. I'll try to update throughout the week. Love, Mom to Emma

2010-01-25T07:18:00.000-08:00

2010-01-24T18:41:00.000-08:00

Tear duct surgery...

2010-01-24T18:32:00.000-08:00

This is my amazing friend Susan. She is an angel to me and has been there for me through lots and lots of trying-I don't think I'm going to make it- times. She has helped me in ER visits with the girls and came and helped me with this surgery. I love you Susan!!!!

Emma and Olivia's surgery went well. They were both extremely blocked. Olivia's surgery went very well. Emma's left side was so blocked that when he unblocked it, it backfilled. So basically we'll just have to wait and see if it filters out over the next few days. If not, we'll go back in and put in a tube. So we'll just pray that it does come out on its own. Emma lost a lot of weight with this recent sickness with vomitting. She is down to 15 lb. 5 oz. and that is on the way up. She probably hit 14 lb. during the worst part. So now we are back on full force trying to get her weight back up. I guess it is just an endless cycle.

The funny part of their surgery...Olivia is bigger so I guess I expect her to be tougher. Nope...she is Miss Drama and kept looking at me like how could you do this? Emma, on the other hand, was just snuggling me and talking and took it like a champ. Just cute and funny! : )

2010-01-19T21:16:00.000-08:00

So we have...crazy hair going on with the twins. They like to pull their rubberbands and hair stuff out (especially while they are sleeping). So this is what you get. The one with all the kids is Christmas at the Albright's house. Alyssa's picture is of her not feeling well. And all of them in the laundry basket is them thinking that they are helping me. : ) Enjoy!!

2010-01-19T07:36:00.000-08:00

I had an ultrasound yesterday on my kidney and bladder. My cyst that they aspirated is back. I think it is a little bigger than a golf ball right now...not too sure. I have an appointment tomorrow with the surgeon to see what he wants to do. He might want to just watch it and let it grow a little more before aspirating it again. Or he might want to go ahead and deal with it while it is smaller than the previous one. If he does, I want it done either right away or after the mini. I just started my training so I don't want to be down too long. I'll keep you updated after my appointment tomorrow.

2010-01-15T12:06:00.000-08:00

Alyssa played dress up with the girls...

2010-01-15T11:00:00.000-08:00

So this morning I woke up to Olivia, in her crib, stark naked with a poopy diaper removed and poop everywhere. Lovely! And to make matters more humorous...today Alyssa and Loren have watched and rewatched (about 30 times) the Huggies commercial where the guy is changing the baby boy and he takes the diaper off and the baby pees all over the ceiling. They guy covers him up and then uncovers him again to change his diaper, thinking the baby was done peeing and the baby pees all over the wall and lamp and pillows, his coat ...meanwhile my girls are laughing their butts off. Loren looks at me and says "Mommy, baby peed wall". I'm thinking that you wouldn't be laughing if you had to clean it up. Just you wait!!!! : )

I'm ready for the girls surgery next week. I'll be a hermit until then making sure we don't have any sickos postponing it. I just want it done. : )

Well, I must go ...someone is calling my name. Imagine that!!!

2010-01-11T19:58:00.001-08:00

I am feeling a little better....they always say that blogging is free therapy and it is true. Sometimes I just need to write my feelings out and the weight lifts off me. I'm getting my strength for the two surgeries coming up next week. These will be easy and I'm so thankful that Emma and Olivia are young enough to not know what is going on. Thank the Lord for that!!!! Then we will meet with the ENT for Emma in February and decide when to do that surgery. Then we should have a break for at least a year hopefully. After these next three, we will have had 18 surgeries in 8 years of marriage. And we are still married. : ) Just having the children in the NICU, we were told a lot of marriages do not make it. Very sad...

Well, Emma is walking and I LOVE it!!!! It truly is a joy!!! A wonderful Christmas present! I could not ask for more!!!

I can't wait to see how much she weighs at her next check. I think she will get weighed Thursday when the visiting nurse comes by. If not, I know she will be weighed next week before surgery. I'll let you know how that goes. : )

Have a great night!!
Bethany

So close..

2010-01-08T12:43:00.000-08:00

Well, with all the family's help, Emma has taken several steps - up to 12. Her cousins decided it was their mission to help Emma learn to walk over Christmas and it has really helped. She is taking off. Thank the Lord!! I was starting to feel like I would never see this day. Easter Seals will be here next Thursday to evaluate her again. I'm praying that they are very pleased with her progress.

Thank you to those who have sent Enfamil coupons. It has helped tons. I know the formula has helped her gain some weight. I'm anxious to see how much but I can tell a difference and she is much happier. I'm still waiting for results from her Ctscan. Her neurologist is waiting to talk to her eye doctor. He is wanting to know if her eye dr. is concerned that her enlarged ventricles might be putting pressure on her eyes. This hasn't come up as a concern yet in our appointments so I'm hoping that he is not concerned.

We are set for surgery on the twins' eyes on January 21st. They had to move the date back due to scheduling complications. I'm anxious to get the ball rolling.

Alyssa is healing well. Her final scabs came off today. Her nose looks beautiful. Some of her scarring on her columela is questionable but overall we are very pleased. She is very pleased with her new nose. She likes that it is bigger and it's kindof pointy like ours. : )

Alyssa had an appointment with her eye (contact) doctor. He put in her contact and she cried for about 10 minutes. It didn't hurt she was just a little traumatized by it. It was more of a "This is not fair..other kids don't have to do this"...etc. So we eventually read a book and got her mind off of it. She did really well. We took it back out and she will wear it about 4 hours a day, supervised, with a patch for a week. Then we will go back in next week to see how it is doing and make any changes needed. Once it shows improvement, it will be considered treatment and it will cost us $210 for 4 contacts. I pay $68 for 12 for myself. So her contacts are very special. This contact is soooooooo thick. I have never seen anything like it. So we'll see how the battle goes this week. : )

I'm drained. I think I'm going through the emotions post surgery and yet the stress is continuing. We are still having ear follow-up appointments, eye appointments, 2 more surgeries and I'm just ready for a break in it. I go in next week for a kidney sono and a visit afterwards to see if my cyst has grown back. Inside I would just love to postpone that for another 3 months. But I know it has to be done.

I don't know why my emotions are so raw right now...but they are. I think the stress of taking the 4 kids out in this weather is hard too. Plus Emma does not need to be breathing in this cold air....not the best for her lungs. I guess I just feel the anxiety building up when I have the appointments, taking all four and praying that they are good. It is asking a lot...I know.

Well, Alyssa is almost home from school. I'm so thankful that my girls are alive. They are such bright spots in my life. I feel as though all the medical stuff has aged me beyond my years, but they have kept me young. My eyes feel tired. I'm sure a boost of energy will come soon. I hope..

Thanks for all the prayers. They mean more than you know.

A few more pictures...

2010-01-04T19:43:00.000-08:00

This bottom picture is of Daddy and Alyssa before surgery. The other two - obviously one is before surgery and one is after surgery....gives a better picture of the before and after.

Here are some pictures of Alyssa..

2010-01-04T15:50:00.000-08:00

So here are some pictures of Alyssa's nose reconstruction. You'll have to scroll down to the bottom pictures (before pictures). And then scroll to compare and see the difference. There is still dry blood and dry drainage that is hard to get off. So obviously it will look even different as soon as that heals. The biggest difference to me is her side profile. She is doing well and the surgeon today was happy with her. Yea!!! We couldn't ask for more.

Recovering...

2009-12-29T05:15:00.000-08:00

Well..we survived another surgery. Alyssa had her surgery on Christmas Eve and has done really well pulling through. They sent her to the pediatric unit instead of recovery #2 so they could watch her more closely being a cardiac patient. She was a trooper. We are amazed by the difference. I'll post pictures when I get home. She still has packaging in her nose and that is annoying to her plus all the dry blood.

We are very blessed to have the surgeon that we had and I know this has been a good move. Thanks for all your prayers and support!!!! Hopefully it will be awhile until our next surgery. Have a Happy New Year!!!

"Mom, is Loren going to have nose surgery too?"

2009-12-21T07:43:00.000-08:00

Yesterday, Alyssa says to me "Mom, is Loren going to have nose surgery too?" "Her nose is a little pointy", I think the doctors can go in and sharpen her nose down". Too funny!

We are having our "Christmas" on Wednesday since Alyssa's surgery is on Thursday. We have been talking with her and so far she seems to not be fighting it too much. They are giving me special permission to take her back in the ER until she falls asleep. So we have had a talk about if she wanted me to do that and that if I did, she still has to get up on the table and breathe in the mask until she falls asleep. Just because I am there doesn't mean you can get out of it basically. So that went really well and I think that is how we are going to do it. The hardest part of these surgeries is me holding it together. The children que into a lot of how the parents are acting. If the parents are crying and blubbering, the children will react the same. So we really try to act like it is not a big deal and just distract her with crafts beforehand. The doctors have mentioned that sometimes they would like to sedate the parents as well. : ) So we'll see how well I do.

Alyssa's ears are healing well. She told me that things were too loud when she got home. So that is good news.

Emma will be having surgery on her ears - she has Keritan Pearls. Probably a genetic thing - we think that is what Mike might have had as a baby. But they have never proven this one way or another. So we are having all our kids checked out. Emma's surgery will probably be in February.

It has been hard for us to enjoy this season. We are feeling the stress of these surgeries and the recovery period. I hope we can breathe a little after Alyssa's surgery but three days after we get back, we have Emma and Olivia's surgeries. I hope that we can take the time to relax a little but it also just might be this year is crazy and next year won't be as much.

I think Emma has labored breathing due to the cold weather. It really does a number on her lungs. We are just continuing with the breathing treatments in hope that she is not losing weight. The formula and rice cereal seems to be helping. That is really good. Easter Seals will come out and evaluate her in January. I really hope she is walking by then. She has taken 4 steps but isn't really trying for more. She knows that she can crawl much easier.

We are very grateful to friends and family that have supported us throughout this journey. The best gift for us this Christmas is just to have all our children alive and well and with us. We couldn't be more grateful for the love that we have for them.

P.S. Olivia likes to get on the table and walk on it while I'm out of the room. The other picture shows her cute self just being cute. Enjoy!

2009-12-15T04:12:00.000-08:00

Alyssa's surgery went well for her ear tubes. She did not want to do it...she told me over and over but didn't fight too much. Grandma Miklik was there so that helped a lot. She had some crafts to do while we were waiting. That helped also. After her surgery, she was in pain but once the tylenol kicked in and the puple popsicle, she was much better. We were getting ready to leave and I asked her if I could stay and sleep in the bed for a couple of days. Alyssa turned to me and said very matter of fact, "This is not a hotel". We got a good chuckle out of that.

While she was in surgery, Mike was at the specialist with Emma for her ears. She has what is called Keritin Pearls. I'm sure I didn't spell that right. She will need surgery to remove them. She will also need a CTscan to see if they go into the ear drum and see if there are some on the "mast"????? This is all second hand from Mike. So I think that won't be until February.

So Alyssa has her surgery next week for her facial reconstruction. I'm not ready for that now but I should be by then. Please keep her in your prayers.

2009-12-11T10:20:00.000-08:00

2009-12-10T12:35:00.000-08:00

What a week! Full of updates...

After spending 5 hours at the hospital Monday, we found out that Emma's kidneys are improving enough that they don't want to see us for another year. Usually it is 6 months. Her kidneys are growing. She was also very positive in saying that she did not think that Emma would need growth hormones but that she would grow in her own time and at her own rate. She said most patients like Emma will just take off when they are ready. Very encouraging!

We also had her 18 month checkup and she has gained a pound since November 19th. Looks like we need to continue the formula and rice cereal. She is at 15 lb. 9 oz. Olivia is at 23 lbs.

Emma took 4 steps a week ago with the visiting nurse. I think she will be walking very soon. Won't that be a day!!!!

Alyssa had her plastic surgeon appointment. We are very encouraged to see what he will be doing and seeing the before and after pictures. I know this will be a hard surgery to get through but I know Alyssa will benefit in the long run. We will be needing to do crafts over Christmas to keep her from rough play. : )

Alyssa's ear surgery is Monday, Dec. 14th. He will be putting in another set of ear tubes. This should be minor and she will hopefully be back at school the next day. There is a Christmas party she really wants to go to. So let's keep our fingers crossed.

Emma had some findings in her ear exam and we are now going to be going to a specialist for her Monday morning. We will be seeing if she needs surgery. I don't know much about what is wrong but I will inform you as soon as I understand what the problem is. They also found fluid on Emma's ears so I'm not sure if they are considering ear tubes also...we'll see...

We will also be checking Loren's hearing. Why not? Maybe we should just have myself and Olivia tested too that way the whole family can go to the ENT. : ) There just gets to a point where you have to joke, otherwise you will cry. Yesterday, when we found out that Emma had ear problems too, I felt like I was trying to eat what was on my plate and someone was just loading on more food. Here I am trying to resolve the issues we are dealing with and here is someone else just loading more on. So Mike will be taking Emma on Monday while I am with Alyssa during surgery.

I heard great news today of some old school friends of mine that are pregnant with twin girls...they also had TTTS and just had surgery and their babies survived when there was no chance just like ours. Praise God!!!

Great day...

2009-11-25T03:34:00.001-08:00

What a day!!!!

We had a home visit with the nurse. Last week, Emma weighed 14 lb. 10 oz. This time she weighed 15 lb. 6 oz. Awesome improvement!!!! The formula must be helping. Anyone that has extra Enfamil coupons, please send them my way.
So then she is just playing around and she is standing by the trunk. She turns and starts walking to the nurse...she took 4 steps. I could not believe my eyes. I think my jaw hit the floor. : ) Then she crawled over by the door and stood on the rug for about 10 seconds all by herself not holding onto anything. Little showoff!!!!! I've never seen her do any of that. I'm so proud of her. She really is a fighter and she proves it everyday. I love good days and steps forward. Keep them coming Emma!!

Getting excited...

2009-11-20T12:13:00.000-08:00

I'm getting excited to see family - Thanksgiving and Christmas. I'm really having fun this year finding presents for people. : ) We have some surgeries coming up. Alyssa's ear surgery is now scheduled for December 21st at 3:30 p.m. Her reconstructive plastic surgery is still scheduled for Christmas Eve. I'm trying to think of a good present to give her in the hospital. Let me know if you think of any good ideas.
Emma and Olivia's surgery for their eyes is January 7th.

We started Emma on two breathing treatments and we are hoping this will help her lungs. She has lost weight...we are now at 14 lb. 10 oz. So we are starting her back on formula. Frustrating but we will do what it takes. She is growing length wise so that is great news!!!

Olivia just woke up from her nap so I must get going.
Love you all and thanks for being with us along this journey. We have appreciated all of you and your prayers and support. We couldn't have done this without you.
Love,
Bethany

Surgery, surgery and more surgeries...

2009-11-16T18:23:00.000-08:00

We had Alyssa's cleft clinic last week and found that she has fluid behind her ears and is not hearing well because of it. She will need her 5th set of tubes put in and we have it scheduled for December 14th as of right now. She will also be having some reconstructive plastic surgery on Christmas Eve. This will take 3 1/2 hours and she will have to be very careful for 3 weeks not to bump her nose and lip.

Today I took the twins to the eye doctor. They both need surgery and that is scheduled for January 7th. They have blocked tear ducts. So we have 4 surgeries within the next two months.

Ending with that, it has been a long day and I'm tired.
Good night to all!
Bethany

Museum

2009-11-10T10:07:00.001-08:00

Last weekend we had a bit of a breather. I think that is really what we needed. We took the twins to my parents and Mike and I took the older two to the Children's Museum in Indy. It was really great and I think the girls just soaked up our attention. Then we stayed in Kokomo for the weekend for Tom's birthday party.

I guess sometimes I just need to break down to feel better. Letting all those emotions and stress out probably helped.

A few updates...Alyssa's eye is not improving so she will be fitted for a contact next week. She will wear this along with the patch. So we'll see. We are down to our last options. Emma is up to 14 lb. 13 oz. I'll be very glad when she breaks 15 lb. They will be 1 and a half years old on Nov. 22nd. Olivia is 22 lb. 13 oz. So they are exactly 8 lbs. apart. I hope that Emma starts walking soon. They will be back in a short while to evaluate her again and we might have to start up therapy. We'll see...

Enjoy the pictures!!

Unload..

2009-11-03T09:37:00.001-08:00

So I'm just going to unload. I had a biggest loser moment...not that I lost a lot a weight (I wish). But every week everyone cries on the biggest loser. Today as I was running I just felt all these emotions surface. How did I get this way? So I was thinking about why and was just overwhelmed. It's like all this stress has been built up and it all just came tumbling down. I realized that I eat a lot more and worse when I'm stressed about my kids health. Which only leads me into more of a downward spiral. Not getting breaks that fill my tank so that I can give to my children and husband what they need is not helping. So part of what has been stressful lately is I think Emma is losing weight. We ran out of formula and the dr. said it was o.k. to do whole milk. Well, she is not drinking as much and I've tried to mix it and put it in her old bottle but it is not mixing well. So I went out and bought another can of formula and she is taking it. But we can't do formula forever. I just don't know. The H1N1 scare is now keeping us out of the nursery at church and I can't put the in daycare at the gym so I can have some time to myself. Frustrating!!! This whole insurance thing...with OSF not being in our network as of 6 months from now.....we will have to switch all our drs. Alyssa's eye appointment is tomorrow and I know it's going to be worse. Since school has started, she hasn't been able to wear her patch even 1/8 of the time. All this responsibility is so overwhelming. Then I see my cousins with their 8 year old who have had tons of surgeries his whole life. And I think how do these people have the strength to keep going? How can I have the strength to keep going? Some days I think someone else could probably do a better job. And then a lady from my neighborhood just came to my door and asked if we would put our Christmas lights up early and let others know too. Their neighbor's boy is dying from leukemia and only has til Christmas if he can make it that far. So they are seeing if everyone can put up their lights so he can see them every day. So I guess that answers my question. With tears streaming down my face... I would keep stressing every day if it meant that I could have my girls with me one more day.

2009-10-29T16:02:00.000-07:00

I think "Crazy" is the only way I can describe things right now. Emma and Olivia are getting into EVERYTHING!!!!!! So if I accomplish anything during the day, it is a miracle. It seems like we are going through a phase right now where they are all very much needing attention. For example, if I'm sitting down where the twins can sit on my lap, they will sit and then they will go about their business and venture off...however, if I stand up, they will cry. So even though I'm not holding them or for that matter, doing anything, I have to be sitting down just in case they want to come back over and sit on me. Olivia also does the thing right before she gets to me where she'll turn around and then walk backwards until she gets to my lap and then sit down. I seriously would love to get a back-up beeper for her.

Emma is much quieter but still demanding. She soaks her shirt daily drooling. Her and Olivia are cutting their last 4 mollars. Olivia has 2 to go and Emma has 3. It's so much fun!! O.k. so maybe not. : )

Alyssa likes school but she doesn't like office time. I guess this is where they have to put up these barriers so they can't cheat off the others papers. I don't think she wants to cheat, she just wants to socialize. Who knows??

Loren is regressing some with her talking...she is talking more baby talk and I know it's cuz she thinks it's cute and she wants some more attention. How much attention do these people need?????????????????? Aughh!!

Loren is very close to being potty trained. We might go and try to buy some big girl panties this weekend. She has some at home but I think it might mean some more for her to pick them out herself. We'll give it a try.

Mike and I are so done with traveling. We have overdone it this summer and we seriously need a break!!! But I have a feeling that won't happen until January.

As far as health goes, I meet with my urologist tomorrow morning to hear what is going on. I know he wants the surgeon who aspirated my cyst to take over until we know that it hasn't grown back but I don't know much more than that. In my opinion, if there is a chance this will turn into cancer, I say we just take it out. Then we won't have to worry. I have a feeling that the chance of that is smaller so they'll prefer to just watch it. We'll see what he'll say tomorrow.
Emma seems to be doing well. We have transitioned her over to just liquid. That is fun! She does very well drinking it. She is eating well. I don't know how much she weighs so I don't know if it has affected her. Last weight we had was 14 lb. 9 oz. I'll be anxious to see what her next weight is. She is one strong girl I just say. The H1N1 scares me for her. I don't know that her lungs and weight can handle getting that. So we'll see...

Everyone else seems to be pretty healthy. We will be going to Alyssa's yearly Cleft Clinic November 12th. She hasn't been for 2 years though. I'm anxious to see when they will start working with her mouth. She has lost 2 teeth and I know that might affect their decision as to when she will have her bone graft and oral surgery. Also, she will need to have her hole in her ear closed soon too.

I think I'm at a stage where I'm tired of everyone evaluating Emma because there is obvious pressure with that. For the most part, I feel that she needs more time. But by feeling that way, I wonder if I'm right and therefore, am I doing the best thing for her? It's just how it is. I don't think that feeling can go away. I think it's probably just part of being a mother.

There is a doctor I've thought about taking Emma to in Florida. He is a homeopathic doctor. We will be getting closer to the possibility of Emma getting growth hormones. This is a shot every single day for years. This is also $20,000 a year. It is looking like insurance will not cover it. Which leads me to possibly taking Emma to this doctor who is my best friend's dad. His visit, which I think involves 3 days), would be $1,200. But I think it would be worth it. The twins are 17 months and we will start talking about these growth hormones as we get closer to 2 years old. So...it's just something that is in the back of my mind.

I am to the point where I need a break but I need it in my own home. I know that sounds crazy but I have so much to do here and so many little people trying to help me out that I might as well sit down and forget it. : )

Well, Alyssa and Loren are fighting over candy so I must go break it up. I love what sugar does to these people. Aughh!!!!!

Love to you all!!
Bethany

I'll make up by posting pictures...

2009-10-29T15:52:00.001-07:00

So I'll try to make up for being a not-so-good blogger anymore by posting some pictures. Enjoy!
The Barbie picture is actually Alyssa's birthday cake. She just turned 6 and is growing up fast!
Mom and her twin are from a conference we went too. That is also where we took the picture of us sisters with mom.
The picture of Mike and I is at a Colts game back in September.

Test results..

2009-10-12T12:24:00.000-07:00

My test results came back from my cyst basically saying that it was infected. The cloudiness in the fluid that was drained from my cyst was not cancer cells but blood and cells that were trying to fight off the infection. I meet with the dr. on the 30th to discuss where we go from here. If he is concerned that it could go into cancer or the infection might come back then we might talk about going in and taking it out. If he isn't concerned then we will probably just continue monitoring it. But overall, great news!

The girls are getting over a sinus infection. Lovely!!!! I'm so ready to be done with this. We have a crazy, busy month traveling and busy, busy!!!!! I'm be ready for November. : )

This was short but I need to go see what Olivia is tearing apart. : )

Fewer and fewer....

2009-10-05T17:29:00.001-07:00

Well, these updates are getting harder for me to keep up with. Things are just crazy!!!!! I'll try to give you updates on each of us.

Emma - had a viral infection which then her skin had a bad reaction to it - broke out in hives or something. She is doing much better now. But two weeks of not eating well hasn't done her weight any favors. She is at 14 lb. 9 oz. So I'm praying we get back on the uphill climb. She has a cookie swallow Wednesday. They will x-ray her while she eats to see if she can have non-thickened milk so we can transition to a sippy cup or at least have the freedom to do what we want. She is almost walking. She walks holding onto things. She is becoming louder by the minute. She is still very sweet and I love watching her grow.

Olivia - is a character. She loves to play and have fun. But she also has a temper like Loren had/has. She swings her arms around and throws herself on the floor and is rather humorous to watch. She is very loving and like to snuggle. She is doing very well.

Loren - is currently sick with a fever. Lovely! She has started talking so much since Alyssa has started Kindergarten. It's very cute! She is also calling the shots as far as potty training is concerned. It is only when she innitiates it. So today she has gone pee pee twice and poopy once. I'll take whatever I can get. : )

Alyssa - is thriving and doing so well in Kindergarten. She scored third highest in her class on one of her testing with letters and sounds/reading. Very cool! She is also behaving very well. Today was pajama day and they had popcorn and had a great time. She loves to beat up/wrestle with daddy.

Mike - working hard. Putting in long days. He has lost 43 lbs since the girls were in the NICU. He loves to go mountain biking when he can. We try to hike with all the kids on Sundays. It's been fun.

Myself - I just had surgery on Friday to aspirate the cyst on my left kidney. There were some unexpected issues but I think it went well. We sent out some stuff to get tested and we'll know more tomorrow. Just trying to get myself better now that my kids are getting there.

I'm exhausted most of the time but I'm keeping up. Obviously not with this blog but I'll do what I can. : )

I'm off to sit and have some down time before bed. Hopefully I can get better with this and posting pictures. Love to you all! Bethany

Took Emma in...

2009-09-15T19:40:00.000-07:00

I took Emma in to the doctor today to make sure her cold hadn't gone into her lungs. It hasn't. Yea! It ended up being her sinuses. Lovely! There really hasn't been any drainage out her nose just congestion in her head. So we started her on antibiotics to help things along. She is doing well though. She doesn't act like it is affecting her. So that is good. We did weigh her and she is up to 14 lb. 8 oz. I'm very thankful for that. Every little bit helps. We will be starting speech and feeding therapy as far as I know. They are supposed to call us and set something up. We'll see how that goes.

Hello

2009-09-09T19:18:00.000-07:00

Things have just been really busy lately. We have traveled a lot this month to see family. It's been really good. We have gotten a lot more done on mom and dad's house which is really exciting. Emma and Olivia have had a cold this past week. I'm sure Emma has probably lost a little weight but hopefully not much. It seems to be better now and the good thing is we didn't end up in the hospital with pneumonia. We have a home visit tomorrow so they might weigh her... not too sure.

The twins and I will be on the news tomorrow night. That should be interesting. : )
Friday, I have an ultrasound for my kidneys. We need to see if there are any more cysts and if my one big cyst is any bigger. If there are more cysts than what I have, they will test me for Polycystic Kidney Disease. If my big cyst is bigger, they will need to have it drained. It will be interesting to see what the findings are.

I think that is about it for now. Until then, enjoy the pictures!

15 month checkup...

2009-08-26T10:46:00.000-07:00

This will be quick...gotta get ready to pick up Alyssa from Kindergarten.

Olivia is right on the money. Caught up completely. Is in the 50% with her height and head, 15% with her weight. 20 lb. 12 oz. She is doing well.

Emma hit 14 lb. on the nose!!! I love to see that next number. Seems like we have been in the 13's for awhile. She is not on any chart - not even premee. But she is growing and doing well and has her own chart going on. We still have her on Enfacare for the extra calories. It seems to be helping. She is really doing well. And she has grown a lot in length so that is good.

Anyway, must get going.

Small Wonders Miracle Walk

2009-08-21T07:50:00.000-07:00

http://jmpradio.com/pods/gd/Podcast0817/POD_4_082009.mp3

This link is to hear the radio interview I had yesterday promoting the Walk. All proceeds go to the NICU. Our family is one of the two ambassador families this year to raise money for the walk. If anyone would like to contribute to the cause, you can send the donation to me and I will take it that day. Anyone is welcome to come attend. Here is the link below of the registration form if you want to walk. All are welcome!

http://www.childrenshospitalofil.org/top/foundation/Small+Wonders+Walk.htm

We are very grateful for our miracles!!!

Trip to the ER, Home makeover and 1st day of school

2009-08-18T13:22:00.000-07:00

So much has happened since my last blog. Life is crazy and fast! What to share first....

Well, Mom and Dad went to Africa 3 weeks ago. Alison and I and a lot of help from family and friends, made over Mom and Dad's kitchen and bathroom. So these are before and after pictures. Mom was very surprised and that was fun to see.

Loren fell off the furniture that she shouldn't be climbing on at Grandma and Grandpa's house in Kokomo, hit her head and we got to take a lovely trip to the ER. Loren got 8 staples in the back of her head. We get them taken out Friday. Mike and I could definitely say we've seen our fair share of hospitals and ER rooms. Now we're just curious....humm....wonder what this hospital is like?

Alyssa started school today and was very brave. She LOVED every minute of it and is very excited to go back tomorrow.

I have been asked to do a radio interview about our experience in the NICU on Thursday. Should be interesting/fun...not sure yet. I hope that we can send a message of gratitude and that we can touch people out there that have been through what we have.

Oh yea, and I found out that I have hypothyroidism. I have an underactive thyroid. I was glad to figure out what was wrong with me. I have had the hardest year having energy and strength, my hair falling out, trying to lose weight and not succeeding and just struggling to get out of bed every day. So I had some blood work done and this is what they found. My thyroid was damaged during my pregnancy. I had almost all the symptoms, I just didn't know anything about this. So they started meds and I'm hoping we are going to get back to normal sometime. They said it should take about 2 months. So I'm trying to be patient. But I'm so glad to know what the problem is so that we can fix it.

I think this is all for now. :)

Starting to walk...

2009-08-10T15:52:00.001-07:00

Yes, Olivia has taken a few steps on her own. She is 100% ready she just would rather crawl most of the time. Most of the time she walks, she is unaware that she is. It's funny!
Emma has taken huge progress in her eating. She is now eating solids. She has 8 teeth which help in the process. She is the strongest I have ever seen her. She stands up and is a fast crawler. It will be interesting to see how long it takes her to walk. By the way, I'm not encouraging any of this (for my sake). :)
Anyway, things are going well here. Everyone is healthy and that is so wonderful!!! Alyssa is all ready for kindergarten and I think I am too.
Well, I'll keep you posted but there is not a lot going on at the moment. Alyssa has her cleft team appointment in November so I'm very anxious to see when we start the next process - which will be with her mouth and teeth. She has already lost one tooth and is growing one in its place so it might be time to get things going. We'll see...She asked for the first time ever if she could put on her patch today. I said yes and asked why. She said "I just don't want to always be like this". Break my heart. Sometimes I do get frustrated ...like ..."Can't she get a break?" It's enough to deal with her heart and her cleft stuff, can't her eyes just be fine? Frustrating...

2009-08-04T06:33:00.000-07:00

So...I'm registering Alyssa for Kindergarten today. I don't think I'm ready. Although it will be nice to have a much quieter house. But I'm hoping Loren will take over and start talking some. Not for the noise sake but for the communicating sake.
Emma has done amazingly since she was discharged from the hospital. Has 6 new teeth and is eating very well. I don't know how much she weighs. She is pulling herself up to a standing position and is crawling very fast! I'm so grateful for her health right now.
We just had an eye check up for Alyssa. No improvement. So frustrating!!! She has even worn her patch for some long days...9 and 10 days...oh well, he is content with the fact that her eye has not gotten worse. With school starting, we can only patch once she gets home at night. So our time is limited. We have 3 more years to try and get this eye working. Once she hits 9, it's set.
Olivia is almost walking. Not ready for that either. :) She is a very sweet, squishy girl. Did I mention she talks a lot?!?!!
I must feed these people now. Must go.

Pictures

2009-07-27T16:41:00.001-07:00

Florida

2009-07-16T13:41:00.000-07:00

Yes, I know...haven't got to blogging about Florida. I came home to 3 sick kids and had to admit one in the hospital with pneumonia. I kind of got sidetracked. So...here are some pictures!! I had the best time! I read "The Associate" (John Grisham's new book) and "My Sister's Keeper". We watched 4 movies- Seven pounds (loved it), He just not that into you (Loved it), Benjamin Button (good but slow going and weird), and Revolutionary Road (Sucked!!!!)(excuse my language). I slept, laid out and enjoyed eating all my food by myself. No one called me mommy and it was nice. No one demanded of me (Even Alison). Just kidding. I was very refreshed to come home and so ready to see all my little ones and Mike! And I really needed that extra energy to be in the hospital that whole next week. So God must have known. : )

So I just need to schedule this trip every year!!!! and I'll be great!!!!

2009-07-12T12:12:00.001-07:00

All the girls are healthy again! Yea! We had a check up last week for Emma's post hospital visit. I went ahead and had Olivia checked out too just to make sure I wasn't missing anything. They are both doing great! Olivia weighs 19 lb. 15 oz. One ounce away from 20 lbs. You go chunker! Emma is trying to catch back up and is at 12 lb. 6 oz. She had been up to 12 lb. 13 oz. before the pneumonia. She is eating very well and we are keeping her on the high calorie formula to help in every way that we can. I keep hoping that I will just wake up one morning and pick her up and for once, she'll feel heavy to me. I want her to take off so badly. She is currently cutting 6 teeth. Olivia was the exact same. She had her two middle bottom teeth and in April, when we were at Carribean Cove, she was up the entire night and in the morning had 6 little jagged teeth just poking through or 1 day from it. Emma is duplicating that now. So much fun! Oh well. It has to happen some time. Emma is developmentally doing a lot better. She has started to clap her hands and blow bubbles. She is crawling very fast and gets to a sitting position from laying down on her own. I think she has come a long way. I hope to see her pulling up soon. We'll see.

I'm counting on you...

2009-07-10T11:52:00.001-07:00

I love this picture where Emma is just leaning back on Olivia like she looks up to her little sister to take care of her.

Couldn't pass up a little humor...

2009-07-06T20:17:00.000-07:00

It was so thoughtful of this company to make a swing for twins. ;) Hey, it works! They actually support each other's backs. Funny! These swings never made since to me..you either have your baby falling forward or lying down swinging. This one actually works to my advantage while they are both still small. Enjoy!

Tell me she doesn't look like she feels better....

2009-07-06T18:56:00.000-07:00

This picture says it all....she feels better, she is eating better, she is happier. And I'm so glad!!!

Happy 4th! Emma is home!!!

2009-07-04T19:14:00.000-07:00

Emma came home today. We missed her so much!!! Alyssa has been telling us that she missed Emma more than we missed her. She says that missed her 100!!! Whatever that means!!! It's so cute though! Alyssa visited Emma in the hospital with me on Friday night. I think it is good for Alyssa to see that it is not a bad place and they have a toy room and she thought Emma's room was cool and you could have ice cream, etc. because within the next few years we'll be facing open heart surgery and Alyssa will need to be in there. Anyway, so within a week, Emma has cut 3 new teeth and is now going from laying down to sitting up on her own. She is also crawling using both legs. And she does this thing where she throws herself backwards which is fun if there is a cushion behind her. Otherwise...dangerous!

Anyhow, we missed her smiling face. I'm going to go rest now. It's been a long day...and a long week....and I'm....tired. Good night!

Might be coming home...

2009-07-03T18:27:00.000-07:00

Emma might be coming home tomorrow. She had a great day with her oxygen being off. We'll see how the night goes and maybe she'll come home tomorrow. That would be a nice 4th of July!

Off and On...

2009-07-03T05:13:00.000-07:00

Emma came off oxygen yesterday morning but by her nap she was back on satting down in the 80's. Since then, it has been off and on. I think she still needs a couple of days to rest and heal. She needs to be 24 hours without oxygen to come home. She is in good spirits and wants to be held ALL the time. When you do hold her, she is squirmy!!! Her weight is up which is good. She is 12 lb. 6 oz. We'll take it! We'll see what today holds. Exhaustion is catching up to me. I crash hard at night and then my other munchkins wake me up during the night. :) Probably lack of attention during the day....who knows?

Emma Update

2009-07-02T06:18:00.001-07:00

So the bloody nose is from the oxygen, being suctioned and the cannula was a bit big. So I asked for a smaller cannula and she seems to be doing better. She is down in oxygen but still on it. She needs to be off of it for 24 hours before she can come home. They are being extra careful with her because of her history. She is a sweetie and demands a lot of attention at the hospital. They are loving to play with her and hold her. She has been wearing me out. :) I forgot how exhausting the hospital can be. She loved being in her swing. She is down to 11 lb. 4 oz. I hope this morning weigh in is better or at least maintained. Please keep praying. We are being proactive and treating Olivia with antibiotics just to be safe in case her cold had turned into more.

Emma

2009-06-30T19:50:00.000-07:00

I went in this morning to find Emma with blood coming out her nose and into her mouth. They said they had to suction her out and it caused her to bleed. The air in the cannula doesn't help and the cannula is a little too big. So I cleaned her up and suctioned her out again and asked for a smaller cannula. Then I fed her for the 1st time. They all tried and couldn't get her to eat. They had called the doctor at 4 a.m. concerned because she still hadn't eaten and her respiration was 80 and they were thinking she should be in the ICU. She also went up to 3 liters of oxygen. As the day progressed, she got stronger and ate better and breathed easier. I ended up feeding her 9 oz. between 11 a.m. and 7 p.m. By the end of the night, she was smiling for the 1st time in a week and bouncing on my lap. I'm glad she is doing better. She is back down to 1 liter of oxygen. She has lost more weight and is down to 11 lb. 7 oz. I hate to see her lose any more. I hope she doesn't. So in order to come home, she has to be off of oxygen and eating well. We'll see what tomorrow brings. Thanks for the prayers!!! Keep them coming!!!

Pneumonia...

2009-06-28T20:08:00.000-07:00

Emma was admitted today with pneumonia and two ear infections and dehydration. She looks so pitiful. We just had their check up on Wednesday and she just had the common cold. Lungs were sounding good. Then she has slowly gotten worse. Then started vomitting - like she does when she is dehyrated. So in we went to the ER and they did a chest x-ray and a ton of tests and came back that she has pneumonia. So she is in the Peds and is on an i.v. and antibiotics and is pretty pitiful. Wednesday she was at 12 lb. 12 oz. and she is now down to 12 lb. even. I don't know how long this is going to take. She is on 3 liters of oxygen. Her sats were 84 when we went in. So please keep her in your prayers. She always needs it.

Enjoying my first day off....

2009-06-18T08:26:00.000-07:00

So I drove to Kokomo yesterday and dropped off the kids to both sets of grandparents. Then drove to Cincinnati last night. Long day!!! But worth it. Slept the entire night without waking up and then took a morning nap. Already loving this. And I started a new book and have read three chapters. It has been so refreshing!!! Alison, Sarah and I leave tonight for Florida. I'll be flying back Tuesday morning. I'm so very thankful for this time to refill my tank and just get some me time. I will miss my girls but not wish that I was at home...until Tuesday.

So here is quick update on the girls. Alyssa had her physical yesterday for Kindergarten. She is 42 lbs. and 44 inches tall. She is doing really well. Her kindergarten is all day...8:30 a.m. to 3:15 p.m. So this should be an interesting adjustment. I think I have found a neighbor who will take and pick her up. Her daughter is in 1st grade. I really hope that works. Taking all four kids inside is not my idea of fun. But we'll make it work no matter what.

While we were at the doctor, I weighed Emma. She weighs 12 lb. 7 oz. I'm so thankful. She is doing very well. She is crawling (G.I. crawl) very quickly. Now I have two that I need to hunt down. On Tuesday, the only way I found her was she was in the bathroom playing with the spring that keeps the door from hitting the wall. These girls need bells on their socks (if they would keep their socks on that would work). Easter Seals came out to evaluate her. She is 1 year but she is about 7 1/2 months developmentally. She should be about 9 months. But she is doing well enough that they aren't going to start therapy...they are just going to monitor her. They will come back in 3 months and evaluate her again. So that is good news. They were impressed with where she has come from and that she is not on any medications. Go Emma!!!

Olivia is standing up to everything. She hasn't started to walk though, which I am totally o.k. with. Last weight she was 18 lb. 5 oz. She is doing really well.

Back to Alyssa...she had her eye exam this week. Her eyes have not improved any more but he still thinks there is time to get them better. So on we go with patching. It is still a constant battle. She says she hates it. The bad thing is when she is in school, she won't be able to wear it because she won't be able to see anything. Aughhhh!! Oh well, we'll just keep on keeping on. I'm sure we'll be hitting the weekends harder and after school gets out.

Loren. Loren. Loren....what to say? I discovered that Loren has been taking food out of our pantry and throwing it away. I know...go ahead and laugh. I kind of am. The not funny part is we have been really trying to watch our budget especially with groceries. I guess she thinks she is cute enough she can get away with it. On a positive note, she took her wet diaper and threw it away for me yesterday.

Well, I'm going to get back to my relaxing day. So nice!!!

1 year old pictures...

2009-06-09T18:03:00.001-07:00

Yep, this is all I got. 1 minute into it and Olivia was hysterical. So this was all we got. Still cute though I must say.

Enjoy!

Update on little Emma..

2009-06-04T18:12:00.000-07:00

Had a BUSY week....Her Cat Scan showed the same. Her ventricles are still enlarged but causing no pressure on the brain and no need for a shunt right now. They will check again in 6 months. He was more concerned with her weight. And who isn't?
Her kidney sonogram showed that her nephrocalcinosis/calcifications/kidney stones are decreasing. It was slightly better but we will gladly take that. She will have another sono in 6 months. She weighed in (with clothes on) at 12 lb. 12 oz. So I don't know her true weight but I will take the fact that she is over 12 lb. Go Emma!!!! Personally, I think she has really taken off. Her activity, her talking, her not staying still, trying to crawl (she is starting to army style it), everything...she is doing great!!! We didn't qualify for Respit to help with childcare but that is o.k. For those of you who don't know what that is, it was a suggestion that we look into Respit to see if we could get some help with childcare so that we could get a break and Mike and I could have some time together. Even though Emma is still dealing with her weight and us trying to keep her from getting sick, she still didn't qualify for this specific kind. There is another kind that she might qualify for when she is 3 years old but I hope we don't have medical issues then. There is a chance we could qualify with Alyssa's heart condition but I don't know yet. We'll just keep going trying to make the best of everything.
We have debated putting the girls in the day care at the gym but our hold back is exposing her to getting sick and would that take more weight off? We don't know how long we have to be careful. But we also need a break here and there. So...we'll see. We might try it on a trial basis.

We are very thankful for where she is. She is amazing!!!! Her urologist is hoping she will make a full recovery with her kidneys. She did say that the only thing she sees in her future is needing growth hormones. But we'll cross that bridge when we get there.

Thanks again for all your prayers!!!

Happy 1st Birthday!!!!!!!!!

2009-05-22T09:19:00.000-07:00

Wow! What a year! Emma and Olivia have come so far and beaten all odds! We were told if we did not terminate Emma, then Olivia would not live either. Well, we got them both so we have a million blessings to be thankful for. As rough and rocky this last year has been, we are grateful for it. It has taken us - our character, our faith, our inner self - and twisted and turned and taken apart and put back together and made us better for it today. Good has come out of this and I pray that more good will continue to come out of it. I pray that we may help others that are hurting, that are watching their children fight for their lives, that know the only One to turn to is God. And then that day comes, when you lay it all down and surrender and say, "They are Yours" and we will serve you no matter what! Then that wonderful peace washes over you. The only peace you can have while your child is still lying their in the same state. Peace not based on circumstances and how good or bad the day is...but peace that God has these precious beings in His hands. What better hands to have them in? Peace from releasing control that you don't have anyway and allowing Jesus to have full control. We are thankful for our daughters and thankful for all of you sharing this journey with us!!! You have been a blessing to us and we are forever grateful to each and every one of you! Thank you!!!!

So on to the birthday day....Mike's parents came up. Linda, myself and all the girls had a picnic outside on such a beautiful day!!! The girls then played in the baby pool. At night, we ate dinner and then had ice cream cake. Emma poked her cake and moved her plate some. Olivia took the cake in both fists and just stuffed until it was gone!!! It was the funniest thing I have ever seen. (Reminded me of the hot dog eating contest on t.v.) Olivia kept looking at Emma like she was making sure she was still ahead. My sister said that I should tell Olivia that this Twin to Twin Transfusion is over. The mess was insane but we had a great time!!!

So Happy 1st Birthday to you both!!! We love you tons!!! And are so glad you are in our lives!!!!

Reminiscing...

2009-05-20T19:56:00.000-07:00

Reminiscing....so today Emma and I were cuddling. She had her cheek laying on my cheek and it was so sweet! And then I immediately thought about last year at this time....how she hated to be touched...her skin hurt to be touched....and how it broke my heart that touching her made her health go down....how you would instantly hear the alarms go off that she was desatting and her heart rate would go down...and then the guilt I would feel....how far we've come.
And then I was reminiscing about Olivia....to think that she has come from 2 lb. 9.4 oz. .....and she is up to 19 lb.....wow! She hurts my arms when I hold her too long. I remember how hard to was to not see their faces from having those masks on...how I got to hold her for the first time.
So Friday is their 1st birthday....what a year! And they have overcome so much! We got rid of Emma's pulsox machine today. One more check off of our list. They will get weighed tomorrow when early intervention come to check on them. I'm always anxious to see how much Emma weighs. I'm hoping for over 12 lb.
I'm sure I will be reminiscing some more the next few days....some hard times and good times...but they always end in the fact that they have come so far and have beaten all odds.

Go Emma!

2009-05-13T13:49:00.000-07:00

We had an endocrinology appointment today. Bottom line....Emma's calcium level was normal for the 1st time. It's never been below 11.3 and it was 9.4 which is great!No more endocrinology!!! Yea!!! Also she weighed in at 11 lb. 13 oz. That is good!
We have a head scan coming up.
I'm making an appointment for urology to see where we are. I would love to wipe all the doctors off of the list.

Alyssa and Loren's room

2009-05-13T07:53:00.000-07:00

Hello!

2009-05-08T05:49:00.000-07:00

So the rainbow picture is off our back deck. You could see both ends. It was beautiful!

Things are well here. It is Friday and THAT I love. I can't believe this twins will be 1 year old on the 22nd. That will truly be a celebration of life! What a year! Thank you all for walking through it with all of us!

Please pray that Emma will continue to gain weight and that she starts crawling soon. Olivia is almost walking. Please pray that she doesn't. :) Just kidding. Kind of.

Anyway, we are blessed beyond belief and have nothing to complain about.
We love you all! Enjoy the pictures!

Mike, Bethany, Alyssa, Loren, Emma and Olivia (Whew!!! That is a lot of names)

Pictures

2009-05-05T14:46:00.000-07:00

I'm still here....

2009-04-22T13:29:00.000-07:00

O.k. so I started this post awhile ago and never finished. What a crazy, busy life!!!!!

So this is Alyssa and Loren's room. It was painted while I was away at women's retreat. We haven't hung anything up yet but I will post pictures after we do.

So how is life going?
Obviously busier or I would have written before now.

Let's just do a quick report.
Emma - weight today is 11 lb. 5 oz. She sure is a slow gainer but we'll take it. In the past two weeks she has taken off. She is now sitting up without help. She is rolling clear across the floor. She is talking a lot more. We meet with the speech and physical therapists this Thursday. She will be seeing all her doctors this month and next. She will be having a Cat Scan done on her brain/head June 1st. She will see the endocrinologist and urologist this month. She will have her year check up also. So I will be able to update you on everything at some point within the month. She is even smiling bigger now and I LOVE it!!!!!

Me - My kidneys....I'm in the process of switching urologists. It's like pulling teeth. I have two cysts. One is .8 cm. and one is 6.8 cm. One on each kidney. Along with kidney stones and calcification. I'm meeting with him to talk about our plan. If they are growing, how long do we wait before surgery. What should I be looking for, etc.

Olivia - doing great! Crawling like a race car. She is standing up on everything. She'll be walking before I want her to - let's just put it that way. She doesn't have a volume control - I wish she did. She is the equivalent to an alarm clock in the morning. When she goes off, everyone is up. Thank you Livy!!!

Alyssa - Graduates from preschool May 19th. Yea!!! I'm so ready from the break of taking all 4 kids 3 days a week to preschool and picking them up too. Thank you summer! But she has had a great year and we will really miss everyone!

Loren - had her 2 year check up today. She is 28 pounds and doing well. There are some things I need to work on. Mostly with her speech - getting her to talk more. It's been hard since her older sister tends to do all the talking. I know...hard to imagine.

So today at Loren's appointment, I asked for a schedule of this month's immunizations for the health department (since insurance doesn't cover any shots). Yep, the only date they are in Washington is TODAY!!! So I'm taking all FOUR to get their shots. Thankfully my babysitter can go with me to help. This is one I don't think I can do by myself. Alyssa has been telling for a year and a half that she doesn't want to go to Kindergarten because she has to get shots first. So this should be fun!!!! : )

Well, I'm off to talk Alyssa to preschool. Oh yea, and I just found out that we live to close to the school next year for a school bus that I have to load all FOUR of my kiddos up to take Alyssa to Kindergarten FIVE days a week. Lovely!!!!!
At least I won't be carrying oxygen, pulsox, apnea machines, etc.

More waterpark pictures

2009-04-20T15:59:00.000-07:00

A BIG Thank you...

2009-04-15T19:34:00.000-07:00

I just wanted to say a big thank you to all of those who have reached out to us over the last year. Some I don't even know. We have received help without even knowing who it has come from. Thank you to my awesome Aunt and Uncle for helping with Emma's formula. Thank you to our church family for helping with Emma's formula. Beside our refridgerator is a tall stack of high calorie formula to get us through the next couple of months to try and get some meat on this girl's bones. Thank you to my mommy and me group for being there for me spiritually, mentally and physically. Thank you mom for practically living with us and taking care of our two day in and day out. Thank you for all the meals during the time we were in the hospital and on bedrest. Thank you for helping watch our children while we visited our other children in the hospital. Thank you to the ladies that cleaned my house while I was on bedrest. Thank you to my neighbor who has been my angel that knows exactly when I need someone to give me a break and watching all four of my kids (even when they were on oxygen and on all the machines) - You are very brave. :) Thank you ladies from our church for giving Mike and I the day to go Christmas shopping for our children. Thank you for praying for us continually - especially when our strength was drained. You all have ministered to us tremendously. You have been such a blessing!!! It is hard to sit back and let others take care of you. But in a way, I felt God's love through you. We try to do so much on our own and try to control things that sometimes I don't think we let God give to us - to receive all the blessings and joys that He has for us. I know I haven't named everyone individually but thank you ALL!!!!! I love each and every one of you!!! God Bless each and every one of you!!!!
Love,
Mike, Bethany, Alyssa, Loren, Emma and Olivia

Awesome Family Time!!

2009-04-13T12:15:00.000-07:00

We had a great time this weekend at the Carribean Cove. The kids loved every minute of it! Loren's 2nd birthday was Saturday. It was a really good time. I'll write more when I get a second - Emma and Livy are both crying. Enjoy the pictures!!!

Fever...

2009-04-06T07:09:00.000-07:00

Loren spiked with a high fever last night. No other symptoms so I'm not sure where that came from. She is sleeping now since she was up all night so I don't know if she still has a fever. Emma is getting over her cold/cough. That keeps her up - especially when she coughs and her pacifier goes flying out of her mouth. Olivia is still cutting teeth so she is up a lot at night. I feel like I'm in the NICU because the girls room is across from each other. They all cry at once and I'm having to hand sanitize as I enter and leave a room. I do not want the twins sick if I can help it. It is such a high fever I would probably have to hospitalize the twins if they got that high. Please pray this ends and we all start sleeping again. I have not slept through the night in over two weeks and it's getting old. I'm pretty much up midnight to 5 a.m. every night.

Other than that, we are looking forward to a getaway in Indy with my family!!! I'm soooooooooooooooo excited!!! Another reason I need the kids to be healthy.
Well, I need to get back to mothering.

Hopefully I will get a weight on Emma today. She has had a cold so she might have lost another half pound. We'll see....

So Let's Blog....

2009-03-31T14:19:00.000-07:00

So Let's just blog here...
I'm tempted to take pictures of my piles of pukey laundry and post them, of the stuff that has cluttered...of my house in general just to make anyone else feel like they live in the cleanest environment. My new ministry is to make other moms feel great about themselves. It's easy for me. All I have to do is make a trip to the store with my 4 kids. Load up 2 in one cart, 2 in the other and push a cart while I pull the other cart. Believe me I've seen the look on people's faces. I just want to say "You're welcome" or "Anytime".
What is hard about being a mom is there is no hole that you can climb in and just say that I want to be alone today. Please don't bother me or I'm just going to sleep in this morning. You know, I think I'll take a nap. Today I spent wasted minutes arguing with my 5 year old that she has to sit in her car seat. So we start talking about the police and if they pull mommy over then they aren't going to be happy that she is not strapped in her car seat....and on and on. Wasted brain power. She stated that she wants to be a grown up. That is her new thing. We try to tell her that we want to be kids....not have any responsibilities, play all day, sleep and eat and have people serve you. "Hey, can you get me a drink?" Yep, those were the days. Alyssa, don't wish these days away. When you are mom, you are going to miss the carefree days of a kid.
So I have this kink in my neck. Hurts and is very annoying.
Emma took a bottle and has yet to puke. Please let her keep this one down. I am trying soy to help her little tummy until it is better.
Well, I must get dinner going. Always something....

Worse...

2009-03-31T10:53:00.000-07:00

Looks like we are going downhill. Went to the dr. and Emma is down from 10 lb. 5 oz. to 9lb. 15 oz. She still has diarrhea and puking. We are going to keep a close eye on her so we do not head back down the dehydration route again. It is very frustrating and I'm so tired of this!!!!
Olivia is fine and has two more teeth. Go girl!
She weighs 16 lb. 15 oz.
Everyone else is healthy. Thank the Lord!!!

We're Home!

2009-03-29T11:39:00.000-07:00

Emma was discharged today. Olivia was discharged last night. Both are doing much better. Emma gained back a pound and a half in the hospital. She now weighs 10 lb. 8 oz. She still isn't back to eating that great but we are doing our best. Olivia seems to be back to normal. Mike should be home in a few hours. I can't wait!!! I'm so glad he went though. But we did miss him a lot! Thanks for your prayers!

Olivia is home

2009-03-28T13:36:00.001-07:00

Olivia came home today and is doing pretty well. She is definitely smiling more.
Emma will be in there at least another day. She is still having some difficulty keeping things down. Her levels are still above normal and she is still recovering. This just really took a toll on her little body. I'm glad she is where she is although I miss her tons. I wish I could be with her now but I have the three at home I need to care for too. Mike will be back tomorrow night so that will help. I'll call soon to get an update.
Thanks for the prayers!

A little better...

2009-03-27T22:02:00.001-07:00

Here are some pictures of the girls. The picture of Olivia smiling is once she could hold down fluids. Now she is back to not so happy.

Basically the girls got sick and it dehydrated them. I knew Emma was losing weight and I just didn't think I could risk her going a few more days and her vomiting was getting much worse. So I took them both into the ER. They did blood work and Emma's results were not good. Her sodium was so high she was in seizure range. This was also causing her to vomit. They had to admit her. Olivia's results were not so bad but they needed to admit her because she had not peed in over 9 hours. They kept waiting for her to go but she didn't until they admitted her. They tried to give Olivia an i.v. twice but her veins kept blowing because she was dehydrated. So it's good that they are both there. They are sharing a room. They have started milk which is really good. I couldn't get either of them to hold that down at home. Emma threw up part of her last bottle. She still needs to rest and become more hydrated. They will do more blood work on her in the morning.

I think that is all for now. I'll keep you posted.

ER

2009-03-27T08:52:00.000-07:00

This is Bethany's sister Alison. Just wanted to let you know that Bethany is taking both girls to the ER. Emma is on her 3rd day of vomiting and Olivia is on her 6th day of diarrhea and is not taking any milk. They are both dropping in weight and she doesn't want to take any chances of them losing any more and hoping the hospital will give them fluids and nutrients that they need. Please pray for direction and wisdom for the doctors and peace and guidance for Bethany and Mike.

Thanks, Alison

Puke, puke and more puke...

2009-03-26T14:54:00.000-07:00

What a hard week!
Loren was the 1st to get sick. Puking, fever and diarrhea. Then Olivia. Then I thought we were done. Nope - next it was me. Boy I am glad Mike was off work this week. But then the last and worst was Emma. Of all people, why does Emma have to get sick? Been through enough, weighs next to nothing anyway....

So she is on her second day of vomiting. Fever is gone. She has lost 2 pounds. She is down to 9 lb. She is 10 months old and weighs the weight of a new born. Aughh!!! This is what stresses me. But I just have to keep telling myself that she will be over it soon and then we can start gaining weight again.

I was able to order 7 cases of the high calorie Enfacare today. Thank you to my church family!!! It means more to us that you will ever know!!! She is definitely going to need it now more than ever.

Well, I'm going to get back to laundry - the never-ending pukey kind.

2009-03-18T13:58:00.000-07:00

So let's see.....

I think I didn't update on Alyssa's eyes. He thinks they are doing better but we still need to hit it hard. This was good news because she does not have to wear contacts for now. We need to keep this patch going. It is the hardest thing to do. I struggle to find the time and energy to keep it on her for long periods of time. But I just keep trying. This picture is of her new glasses that are on order. Her prescription had changed so it was time to get new glasses. She really wanted these hidious barbie ones. So I convinced her that these cute ones were barbie too. And they were. So that is what we got.

Emma finally hit 11 lbs. Yea!!!! What a continous struggle. My new problem/challenge is that she is getting stronger (which is good) but her suck is stronger which scares her when she eats. Her food is coming out faster and she doesn't know what to do with it. So I'm working with fixing that. I think it is getting better.

The picture of my sister (pregnant with her 10th child) and I is at a Hearts At Home conference. We had a great time!

The picture of Loren is her little self trying to get out of bed. What am I going to do with her???????

Well, enjoy the pictures. My next ones will be of Emma.

Day of poop....

2009-03-10T08:20:00.000-07:00

If you are queasy by the title...don't keep reading.
So yesterday I was getting ready in my room. The girls were in the living room. Olivia was playing on the floor. I walk in to find that Loren was playing dolls with Olivia. Loren had taken off Olivia's pajamas and was in the process of changing Olivia's diaper. The diaper was off. She had the wipes in her hands ready to wipe. The only thing was there was this huge log that had rolled off the diaper onto the floor. Lovely!!!! I about flipped...then kept my cool, took a picture (had to show Mike), then went on to clean it up. After I showed Mike that night I deleted it. It would make anyone throw up so I didn't post it.
Then I'm giving all the kids baths and Loren decides to poop in the tub. Lovely again!!!
Enough pooping stories.

Head in the tree...

2009-03-09T05:56:00.000-07:00

O.k. so this picture is hilarious. I walked into the kitchen and this is what I saw. Then I saw Olivia through the tree. Little stinker. She had taken a branch and pulled the whole thing down on her head. Thankfully, she was not hurt.

We road tripped it this weekend to Cincinnati and had a great time!!! This is a picture of Olivia in the car chillin like a cutie does.
Emma fell asleep in her exersaucer.
Loren LOVES to act like she is driving the car. (We are in trouble)
Alyssa is drinking out of her sprite bottle.

Emma cut her first tooth this weekend. I'm pretty sure the second is almost through. But Yea! So exciting!!! She is up to 10 lb. 13 oz. Another exciting thing!!! Olivia is up to 16 lb. 10 oz. She is crawling like crazy. Emma is starting to be much more active too. As she grows you can tell that it allows her to do so much more.

I need to unpack so I'll write more later but enjoy the pictures.

Back to Front

2009-03-01T15:03:00.000-08:00

Today was a first for Emma. She rolled over from back to front for the first time. Yea, Emma! We have had a rough two weeks with a cold where she has lost about a half a pound. We are hopefully on the upswing now that the cold is gone. Hopefully we'll get some weight on that girl here. Olivia is closer to crawling like a pro every day. I don't know that I'm ready for that but it is coming whether I like it or not. I don't have a lot to write right now and it's time for all four girls to get a bath. But I will try to post pictures soon.
Love,
Bethany

Not going anywhere and loving it...

2009-02-20T13:41:00.000-08:00

I really enjoy the days that we are all at home. Don't get me wrong...Hermitville is no fun either. But pretty much every day I'm loading up all my kiddos and it's just nice to not do that today. I was actually able to get everyone down for their naps and they were able to finish them for once. Nice!!!
Olivia and Emma are really growing. Emma weighed in today at 10.4 on my scale. That is with a dry diaper on and socks and of course her pulsox probe. So I think we are gaining. She loves to talk and smile. She is just so pleasant to be around. Not that demanding - yet. Olivia is a mover and a shaker. She has started to crawl some. Oh I am so not ready for this!!! She keeps me on my toes.
The thing that is funny and irritating all at once is this. Emma takes a pacifier and I love it! Olivia used to take one and suck her thumb and she has decided against both. This has been awhile now. Well, Olivia will crawl her little self over and take Emma's pacifier and put it in her mouth. Emma is usually not happy about that. Then I have to wash it because Olivia has a small cold. I keep telling Olivia that she had her chance to use one and she still can but she can't keep doing this to Emma. It's like "No thanks, I don't want one but I'll go take hers". How about that? What a stinker!!!
Loren is Loren. Loren does things when she gets mad. She'll hit her leg. She'll take off her clothes. And her new thing is she will drool/spit out her mouth until it is on the highchair or on her belly. Again...lovely!!!
Alyssa is growing up and is so sweet!! I'm just loving her brain right now and how sweet she is. She is so motherly to her sisters. I'm ready and I'm not ready for her to go to kindergarden. It is a good thing we still have a little while.
Well, I must go. Until I have another 5 minutes to spare.

Thanks for the tips...

2009-02-16T11:32:00.000-08:00

Thank you for all the tips and ideas to help. We have looked into everything...grants, WIC, Kids insurance for IL, ....everything. We don't qualify. We are just over the range of everything for a family of 6. We have exhausted all our options and talked with many people including our Early Intervention Nurse. Nothing. We will just see how things go and do the best we can. Right now, we have one case of Enfacare we are working on. They have opened it up that we can also give her Neosure so that will help out to have another option. I'm not stressing. I'll just keep weighing her and seeing how we are doing. Thanks for all the advice.

NICU visit

2009-02-10T16:58:00.001-08:00

We had our NICU visit today. Emma is doing fabulous! That seems to be the word from there. They discontinued her oxygen and her apnea monitor. They said that we should keep her on the pulsox machine during the night until we are out of the RSV season. He said at least until the end of March. That is fine because it will just allow me to sleep a little better. We are also keeping the nebulizer for now. Even though she is not getting her breathing treatments we need to hang on to it until we are in the clear with cold season. He said it could keep her out of a few emergency room visits.
She is 23 1/4 in. long, head circum. is 38 1/2 cm. and her weight is 9 lb. 14 oz. He said growth wise she is doing well heighth and head circum. but we need to fatten her up. She is on Parent's Choice and they want her on Enfacare. (Enfacare has higher calories). I have put her on Parent's Choice because it costs $11.88 a can. I can feed her for about $100 a month. It costs me $600 a month to feed her Enfacare. I have bought several cases so I know how much it is and how long it lasts. It is frustrating because I want what is best for her but do we put $700 on the credit card every month for the next 8 months (they want her on formula longer than normal). Plus we put rice cereal in it, which is about $50 a month. We also started baby food so there is more there. It all adds up. They are going to see if they can get a rep. to help. I'm all about the responsibility on our heads. We had three close together. Three in diapers. Two on formula. But between feeding Emma and Olivia on the two kinds of formula - that is $850 a month that we can't pull out of the air. Plus, with the economy right now...we need to put money back too. It just is frustrating to be in a place where you are having to choose between your child and going further into debt. And all because there is 2 extra calories per ounce. I don't get it!
I hate to even write my frustration because it was a good appointment and she is doing fabulous!!! But....what do you do????
To leave on a good note....Emma is off all medications and technically off all machines. Yea!!! Go Emma - you Rock!!!

Baby food and tantrums....

2009-02-05T08:38:00.000-08:00

Emma and Olivia are 8 1/2 months old. Gestational, they are about 5 1/2 months old. I went ahead and started them on baby food. Oh I really don't enjoy this part but it has to be done. I'm not one to rush starting baby food. The bottle is just much easier. :) But I did start it. I'll have to take some pictures and post them. Olivia is doing pretty well except she doesn't open her mouth very much. She starts sucking on her tongue as soon as she sees the spooning coming her way. Emma opens her mouth but then once the food is in, she is like "What the heck is that and what am I supposed to do with it?"
Loren has reached a new stage (starting yesterday) of temper tantrum throwing. Maybe this is because we are nearing 2 years of age. I don't know but it has to stop. I've just been putting her in her crib when she throws her fit and she can stay there until she is done. Her main fit comes when we come home and she refuses to get out of the van. It's absolutely freezing outside and I don't know what kind of buttons she would push in the van. But I'm sure I would find out next time I got in. Yep, lovely!!
Other than that, I don't have a lot to write. Olivia is coming close to crawling. Emma rolls from her tummy to her back. Olivia is all over the place. We had to take them out of the same crib because Emma isn't going to live long if we keep her confined with Livy. So we'll see. Last night Emma slept in the pack n play. We have got to figure out what we are doing with the sleeping/room situation. Plus, Livy knows we are in the same room. You get up and you see these little eyes poking out over the bumper. It's like she's saying "I know you are there".
Alyssa had a great report today from her teacher. We are starting to work on her address and phone number today. The address is pretty easy because it is the name of her cousin, Anne.
Well, I'm off to attempt naps for the twins.

Shots and weights...

2009-02-03T12:08:00.000-08:00

Sunday, Feb. 1st, our nurse came out to give the girls their RSV shots. They have to get weighed to know how much of the shot to give them. So the nurse had been here January 2nd to do the last shot. At that time, Emma weighed 8 lb. 6 oz. Sunday (a month later) Emma weighed 9 lb. 13 oz. She gained a pound and a half in a month. Really, really great!!!! Olivia weighed in at 14 lb. 14 oz. Both are doing very well. We have Emma's NICU appointment on Feb. 10th. Hopefully at that point she will be off all machines, oxygen and meds. Wouldn't that be great!!!! I just ended her last breathing treatment. I need to see how she will do while I still have her on a machine. So far, she is doing incredibly!!!! We'll see what they have to say.
Well, I'm off to get Alyssa from preschool. What a miserably cold day!!!! I'm so ready for Spring!!! Please get here soon!!!!