Monday, March 14, 2011

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" "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.

Wednesday, November 17, 2010

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!!!!

Wednesday, October 13, 2010

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!

Sunday, September 19, 2010

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'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.

Wednesday, September 1, 2010

So I keep going back and forth whether to keep up this 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.

Tuesday, July 27, 2010

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...: )

Friday, July 16, 2010

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 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!