Monday, June 16, 2008

Kinda normal stuff

Day two of summer break is well under way. The boys began swimming lessons yesterday. They need to be be in the pool at 7:30. Yes, 7:30 am. The drive is about a 20 minute drive so there is no sleeping in around here. Yesterday was the hardest. We hated stirring them that early but today was a little easier. We'll keep this up for the next several weeks. At least until we see marked improvement in their skills. Last year was a lost swim season due to being house bound with Miss Zoey and g-tube feeding her 20 hours a day and keeping her away from germs. So this year becoming strong swimmers is our goal. Hopefully we can make up for a lot of lost time this summer. We really want to fill it with fun stuff. One of my guilts is certainly that the boys have missed out on some things over the last 15 months as well as time spent with me. I don't think they are any worse for the wear, but I still carry that guilt. Time to let that go of that with them as well as the girls too. I know what they have gained far exceeds what I classify as a loss. I continue to be so proud of everyone's ability to adapt effortlessly with the ever changing times around here. Zoey's weekend was fairly uneventful. The great news is she did not break out in hives again. I really felt strongly that there had to be another explanation other then the Topamax. I decided to do my own experiment and I discontinued the Pediasure. It was the one new thing in her system that I had the power to play with. Meaning, anything that went on and into her at UCLA, I would have no idea how to eliminate those as possibilities. Pedisure seemed to be a good start. Well, coincidence or not, as soon as I did that, no more hives. We saw her pediatrician Monday morning and he was thrilled. He certainly would have hated to see us having to change up her medication at this juncture. You can see it in his eyes how pleased he is on how well she is doing. So, hopefully we have solved the case of the hives. Today we went to have a blood sensitivity panel, an IGE , that hopefully will pinpoint where her allergy might fall. We are thinking milk or soy. Till then I will stay in a holding pattern. We are really struggling with her appetite. She went from 16 lbs. 4 oz. to 15 lbs. 12oz from Friday to yesterday. Topamax is a major appetite suppressant for some of these kids. In fact I have found out that Topamax is highly sought after for some adults as a diet aid. Strange but true. It is pretty surreal to hear your child's' physician speak into his wireless recorder and say, child's ANOREXIA is most likely brought on by the Topamax she's taking. ANOREXIA, my gosh she's only 15 months old. But that's the official wording of it. So time to plump up the child. The routine now becomes nurse her as long as she will. Which is not much and she is very distracted. Then I pump when I think she is done. Then try some solids, which she is not really into, but I have to continue to offer her orally because we don't want her to lose the desire to feed by mouth. After I do all the oral stuff then I will g-tube feed her 3 ounces or so. We will then go to a Pediatric nutritionist after we decipher her allergies and maybe they can give us some pointers. Feeding issues are not at all uncommon with children with developmental delays as well as seizure disorders. It is just going to take phenomenal perseverance on our part to work through it. So of course that's what we'll do. She had ot/pt yesterday. She has that 3 times a week. She is working so, so hard to regain what she has lost. I believe we find ourselves back to where we were before the seizures took over in February and even slightly ahead of that. People often ask me what she can or can't do so I'll give it in an abbreviated version: Zoey can roll both ways, sit with support, has great neck strength and head control, she grabs her toes and has just begun putting them in her mouth (so cute!), she nurses and can eat/swallow with no problem (when she wants to.) She can put minimal support on the floor if you stand her in an upright position, Zoey hates to be on her tummy, we believe it is because she laid on her back for her first 5 1/2 months until her heart surgery, so the minute you place her on her tummy she flips over. Tummy time is so important for core strength but no matter what we do we cannot keep her there long. She lifts her head way up and over she goes! She can turn pages in a book, she can play with toys in her hand for prolonged periods of time, she purposely reaches for any and all things within her sight and beyond, however, Zoey can only use her right hand due to her stroke. Her left is basically just as strong as her right but she often doesn't realize it is there. She has disregard of it. But if you place an object in her left hand she will immediately transfer it to her right because she feels more comfortable. It remains one of her biggest hurdles and our biggest struggle to help her with. I guess if I had to put her physical development at a month level I would say maybe 5-6 months. Her stroke and seizure combination has really set her back. Socially though she is really on top of things . She loves people and activity. She smiles and reaches towards people. She is very interactive with her surroundings. She can be shy at times also. She is truly a darling, endearing soul. She will find her way in time. We know she will. We did hear back from UCLA today. Dr. Sheilds is away for the week so a Fellow called us. We are hoping to talk to Dr. Sheilds when he returns next week but here is what she was able to tell us and what I was able to understand. Nothing new on the MRI. Stroke site of course the same. We didn't expect there to be anything different there. The PET scan confirmed that her seizures originate from her stroke site and everything is limited to her damaged right hemisphere. Which is good news. They are happy that she is doing well on the Topamax however it will not allow her to be seizure free. It is just controlling the seizures which is great but it is not a complete fix. If she stopped the medication we would most likely see seizures return as well as there is a chance she will develop another seizure disorder at some time. She told me that because Zoey had her stroke prebirth, that her left side has most likely taken over what was needed from the right. All that probably remains on the right amounts to just damaged / dead tissue. Sounds so harsh but it is most likely the reality. Our question to Dr. Shield will be, where from here? In his expert opinion and he is one of the renowned experts in his field, where would he proceed? Do we remain on this path seeing she is doing so well or if they truly feel that seizures will return because of the brain damage do we do something now or when we see some outward expression that things are changing for the worse. My initial reaction was why would we wait until she did some sort of downward spiral, why not do the hemishperectomy now but then the reality of the surgery is slightly overwhelming. I am anxious to speak directly to him . I often like to pose questions to Doctors in the manner of, What would you do if this was your child? I think we will say the same to Dr. Shields. Next week may hold some interesting things. That is the update for now. The picture today is from her therapy session. We try and occupy her with a toy in front of her to keep her on her tummy but it doesn't last long. We are so glad to have summer break here. Even though our home tends to be often hectic, summer brings a welcome break from the monotonous routine of the school year. Another thing, since I have the blessing of having such an age gap between children I am able to look past the insane moments and know in a blink of an eye they will be grown and they will be doing their own thing and they will not need you in the same way. Sometimes that is what I try and convey to mom's in the midst of life with young ones. It all passes. Far too quickly. Even in the throws of tantrums. You will miss it when it's gone, trust me. See what happened to me ....... I kept going! Just a little gift of wisdom that has come from being a "seasoned" mom and the very lucky mom of Zoey who puts instant perspective on it all. As always, a huge thank you to all that keep tabs on our little crew. It continues to be such a source of strength and comfort knowing we are loved and prayed for.


Carey said...

Thanks for the update, I'll be anxious to hear what your doctor says next week ... I too ALWAYS ask the doctors, what would you do if it were your child. That's how we decided to put Chelsea on a study for her chemo regimen. Hoping you all have a very FUN FILLED SUMMER!

Pam said...

I hope you guys have an awesome summer, and that the meds keep working well.

Let us know what the Dr. Says next week!

Thinking of you and praying always.