Our Week

The Wilson household has been busy household over the last week and I have been choosing sleep over extra activities that I normally would be doing once the girls were in bed, such as blogging. So, I thought I would give a quick update on our fun but not overly interesting week.

Finally my sister, her son, Vada and I were able to get together again! It has been over seven months! This was not just the highlight of my day or week, this was one of the greatest highlights of my 2011 year, so far! I have missed her and my little nephew so much.


Vada had her first taste of a smoothie. She seemed to like it, but not enough to try it again. I cant seem to catch her interest in any specific food other than breast milk! We are having a speech therapist come in next week to watch her while I attempt to feed her. Afterward, we will figure out what needs to be done, if anything to help Vada with eating and her mouth control.

I have been working on some major "spring cleaning" this week and throughout the last month. I have cleansed our house of so much clutter already and there is more to go soon. I am hoping that with in the next two weeks I will be completely finished including with my scrap room. Then I can catch up on some scrapbooking. I have two years of photos to do and then some!

Justin tore a wall down in the basement for me and he recently finished another end table that he built. This one is for our house, it's made out of cherry and it is beautiful. He wants to start building furniture and selling it. Maybe have his own business sometime in the future. He's great at whatever he does and I know that he would create a wonderful business for himself, if that's what he chooses to do.

Sometime this weekend my elliptical is coming in and I cant wait! I have missed exercising so much but I have also lacked in the motivation area. I'm ready to get back in to a routine!

I was in a fender bender last Sunday at church and I am still unsure who's fault it actually was. I believe that we were both at fault because we were both in reverse. Either way, its hard to tell so Justin and I took the dive and wrote a check for the damage as to not involve our insurance and in the long run save us money. I was the one driving, Justin was at home asleep from working a night shift. I felt horrible waking him up to tell him about it. Luckily, my husband is very understanding.

Vada and I took another trip to Peoria, this time to meet with her Endocrinologist, for her Thyroid.


Awhile back I wrote about her having Hypothyroidism and this was just a follow up appointment. Everything went well, we are just waiting on her lab results. There may be some minor medication adjustments but nothing overly drastic. She measured the same as before, around 25 inches and now weighs 18 pounds- 8 ounces. Her weight is fluctuating due to her loosing the weight that she gained while on ACTH and having Cushings.

The girls and I went to church this Wednesday for a special Ash Wednesday service. We sat in a pew filled with and surrounded by church members and it felt great! Actually, Vada was held by a wonderful lady who not only works with the youth she is also in the Sunday class that I will be rejoining eventually. It was odd not having her in my arms like I normally do, but Kiliegh quickly replaced that void by lying her head in my lap an pleading with her hazel eyes for me to play with her hair.

Two more things that I am excited about are everyday things to most people, but almost a rare delicacy in our family..., were having company over! Yep, this Saturday Were having one of Justin's friends and his family over for lunch. I'm excited and overwhelmed..., its been so long since we've had anyone other than family over. I cant wait for the interaction and the commotion of the extra children. It'll be fun.

Then, this Monday I set up a luncheon with one of my closest friends and her two little one's. Her and I have grown apart somewhat over these last few months, which is to be expected. We weren't allowed to have Vada around others and she has recently had her second child, so she has been very occupied as well. Needless to say, I am excited to catch back up on our friendship and on all of the things that I have missed over the past year or so.

Things are beginning to really balance out. The sun is shinning more and for longer periods of time. The girls are all thriving and for the most part, getting a long. I have been keeping busy and enjoying all of life's little pleasures. My husband has been successful with his carpentry so far and has some small jobs lined up. Its been a good week and I look forward to the days ahead not with fear but with high hopes and on the brighter side of the spectrum.

A Milestone

It's been so fun watching Vada grow and progress over the last month, even more so now that we know that she is not having seizures. The swelling from the cushings has gone down considerably and it seems as if all of the ACTH must out of her system because she is just so alive.

Yesterday, she was laying on her belly and made crawling movements towards her purple dinosaur rattle and she actually made two small movements forward. I tried to record her doing it again, but I was unsuccessful. I swear she knows the moment I push {record} because as soon as I do, she stops what shes doing.

I've been saying this for awhile now, but I know that any day she will be all over the place, and today was just another step in that direction!

I remember when I was pregnant, I was reading books and surfing the web for information on Down syndrome everyday. Everything that I read told me that there would be developmental delays. The first time I read that I turned to Justin and said "Vada will probably be our last baby..., so, she'll just be our baby for a little longer..., and that's okay." I meant it when I said it then and I still feel that way now. I am proud of who Vada is and when she does reach a certain milestone no matter how small or how delayed, I celebrate it!

Today, Vada sat on her own! Well, she had a little help from her boppy, but it was the first time that she has ever done this. She stayed up for minutes, not seconds and when she began to fall to one side or the other you could see her using all of her muscles to pull herself back up.



When I got down to take her picture she gave me the sweetest smile. It may have been a coincidence, but I think she knew she was doing something big!

Not as Bad as it Could Be

Vada and I have been home for about two hours now. The discharge literally took hours today, but were home now and that's what counts!

Dr. Shaw, one of the cardiologist came in around 10 a.m. and discussed what he saw in Vada's Echo and EKG. At that time he hadn't looked at her chest Xrays so everything he had said at that point kind of just sat in limbo until he came back..., around five. When he came back he brought Dr. Bramlett, another cardiologist from their group. Dr. Bramlett has been following us since my pregnancy. He was the first and only cardiologist that I saw when I was pregnant. Since then we have met all of the cardiologist, but I still like Bramlett the best. I'm familiar with him and he is familiar with Vada's heart and that comforts me.

Dr. Shaw and Dr. Bramlett stood outside of Vada's room for forty to forty-five minutes before coming in. It took them quite a long time to actually enter Vada's room and really tested my patience, but I finally received news that made sense and left me feeling semi confident in bringing Vada home again.

Vada is having difficulty breathing because her heart is enlarged. It is being called Hypertrophic Cardiomyopathy (HCM). Right now I am understanding that the HCM in Vada's case is being considered a "symptom" or a "side effect" and not a "disease". Basically what it means is that the walls of Vada's heart are too thick. There has been a plaque like build up on them. Most likely a side effect from the ACTH. The build up has made her heart not only larger but heavier. Her lungs have become a cushion that her heart is weighing down on and in return is causing the breathing difficulties. With the HCM setting in surgical repair becomes a difficulty. Actually, the surgery would be fine. The recovery most likely would not be. With HCM the heart has a hard time "relaxing" and that is needed for a repair to fully take place. Vada would most likely struggle very hard to recover. This is something that we have all agreed is not a risk that we are willing to take at this moment because above and beyond all of this we are still dealing with the fact that Vada is Immunodeficient and possibly has Adrenal insufficiency. Meaning fighting off infections would be another difficult process on her little body.


Two weeks ago we were told that Vada is having Congestive heart failure. Today we are being told that this is not fully the case. Today we are being told that over all her heart is about the same as it has been all along, other than the HCM. She will still need to have surgical repair, just not right away. After discussing the HCM we then went to the Tachycardia (rapid heart beat).

Vada has ASD and VSD as well as an aortic stenosis. We have known about the stenosis we just refer to it as the "narrowing" of one of her valves..., because it' easier to understand and say. The stenosis is actually benefiting Vada because it is helping prevent blood flow into her lungs. However, we do know that she does have some fluid retention on her left side. The doctors believe that Its everything combined causing her her heart to over work. You have probably seen shows about people getting addicted to steroids and that there is withdraw when coming off of them. The case is the same with Vada coming off of the ACTH. Some children just struggle harder. If you add her withdraw to the un repaired ASD, VSD, stenosis, Cushings, and the HCM then you have one strong little baby going through a whole hell of a lot!

What does this mean over all? It means that we wait. Tomorrow is the last day of ACTH and Keppra. If the HCM is caused from the prolonged usage of the ACTH then we should see a decrease in the "thickness" of her heart over time. As her heart size (the walls) and her body weight goes down her heart should not be so over worked and the tachycardia should decrease as well.

Vada goes back to the Cardiologist in a month. She will have another ECHO done then to see if we notice any progress. Hopefully we do. However, it may take a couple of months for things to go back to "normal". Both Dr. Bramlett and Dr. Shaw agree that we wont need to do surgery for at a couple of months, which puts us into early to late Spring. Maybe even back into the summer.

We were told that there will probably be more moments where Vada will have labored breathing or rapid heart beats and we will have to pay attention to the consistency and extremeness of each episode but over all Vada should be just fine.

A Speedy Wean

Not a whole lot has changed since we have last seen Dr. Jennings. Vada has put on a good chunk of weight, which has us all a bit concerned. She is over nineteen pounds now and hasn't really grown in length. Currently she is wearing 6 to 9 months in pants but 12 to 18 months in tops because of her upper body and head size. Her weight gain is because of a few different reasons, but they for the most part, they lead back to the ACTH.

The first contributing factor is from what is called Cushing's Syndrome, not to be confused with Cushing's Disease. It is very apparent in her face, neck and abdomen. To control the CS Dr. Jennings is weaning Vada off of the ACTH quicker than planned, by one week. Her original day to be off was November 19th, now it's the 11th. There has been no signs of seizures since she was first placed onto ACTH so it seems like a safe thing to do.

Another side effect of ACTH or any steroid that I have ever been on, is being hungry all of the time. Vada wants to nurse ALL OF THE TIME, especially at night. During the days usually aren't too bad. She wants to nurse every two to four hours which is more common in a new born than at her age. She has however taken to solid foods and that also seems to subside her a bit. She wont take a bottle, which is fine, but I am trying to introduce a 'natural like' sippy cup to her, with water. Shes not too interested in that either, but on that, I will be persistent in constantly reintroducing it. By giving her water I am hoping to cut down on her calorie intake, but first she has to start drinking the water.

It's the night feedings that are the worst. Between the time she falls asleep (about midnight) and all of the times that she wakes up to nurse, her and I do not get much rest. There have been times when she has woke up seven times wanting only to nurse and nothing will calm her but nursing. Usually, its about five times though. Not letting her nurse is really not an option. When she wakes up she is in a decent mood. Tired and kind of out of it, but knowing what it is that she wants. If I try to hold her off from nursing she becomes agitated and her body movements become distorted and tightened, like she is very uncomfortable. It's not quite a tantrum like you may be thinking. It's hard to explain. It'll escalate until I do nurse her. I don't like attempting to hold her off for too long because then I become concerned with her heart issues. In my opinion she has enough stress on her heart as it is. Since the doctors know of her eating/nursing pattern and have never told me to stop what I am doing let alone change anything, I plan on continuing our nightly binge nursing sessions.

To help with her appetite we are trying the drug Topamax. If you follow my blog then this name will probably sound familiar to you. It is something that I brought up a couple of weeks ago. We were going to put her on it because she was having a hard time taking the Keppra. Actually, I was having a hard time getting her to take it. However, I figured out a way that works and we decided against the Topamax because the amount she would be taking would actually be more than if she just stayed on the Keppra. Now, however, the theory is that the Topamax has a side effect of making you sleepy and not hungry. It doesn't sound ideal when you are thinking of having a baby use it, but in our situation it sounds like the right choice. We have to wait until Monday for our pharmacy to get it in because Dr. Jenning's wants us to try the powered form that comes in capsules. He thinks by adding it to some solid food she may have an easier time ingesting it. One can only hope.

Other than the slight shift in medications nothing else was done today! Especially, no lab work! I did make it a point to ask Dr. Jennings again about when he thinks it would be okay to bring Vada back around friends, family and the general population again. Since Justin was with me I thought it would be a good thing for him to hear straight from the doctor.

On a side note..., in the beginning of all of this I had a friend who had already been through this situation with her daughter tell me about the isolation that would take place. I had my doubts in its extremeness, so because of my doubts I feel as if other may have the same ones. It does seem a bit crazy that Vada cant go to church with us or to family functions or even that we cant have anyone here at our house. A little too extreme, maybe. However, after educating myself on the situation, I will keep her away from everyone for as long as I am told to and I wont second guess it because I know how important it is for her health.

Having Justin hear it from Dr. Jennings kind of reaffirmed things for me. Since Justin had yet to meet Dr. Jennings let alone come to one of the neurologist apportionment's, I was nervous that he thought perhaps that I was over reacting..., you know, being overly protective.

Here's the deal, straight from Dr. Jenning's mouth "Not a good idea until after Easter".

Why Easter? Well, Vada has about three more weeks of the ACTH. Then she has to get it out of her immune system before her immune system can start building itself back up. Then, we have to go back to her four month vaccines and slowly start to get her "up to date".

Some of the vaccines she will never be able to get due to their history of breaking down the barrier for seizures or possibly causing them. Getting her "up to date" will obviously take time because there are several missed vaccines as well. Plus, she was already on a slower vaccine schedule due to her heart issues.

IF Vada were to catch a cold it is very possible that she would not be able to fight off whatever she caught and it could be fatal. Since we are now getting into the Winter and cold/flu season waiting until Spring is a safe plan for Vada.

So depending on the weather, how Vada is doing and how the rest of the family is feeling (because we get sick too) we are planning on bringing her back out into the public..., to church on Easter Day.