Wednesday, December 3, 2008

Quick Update

Just a little update on my Dad and another appointment for Isaiah . . .

My Dad

My Dad hasn't been feeling his best, again. He was doing so well until he did too much, again. =0) Anyone who knows my Dad knows that he just can't keep still . . . or quiet, so he was working too much and started having chest pain again.

In the middle of the night on Saturday, my Mom took my Dad to the ER for chest pain. Again, it was pericarditis, but in the beginning stages. He was given some pain meds and sent home. If you remember from the last time, they will no longer admit him to treat this - he will just need to make an appointment and see the cardiologist when this happens, unless it's in the middle of the night and really bad. Since he keeps getting this (and it's not necessarilly something you get more than once), the doctor is thinking it's probably because of the leukemia. I feel so bad for him - this is really frustrating to him. He has also been acting weird since then - he is sleeping a lot, shaky, and jumps in his sleep. I thought he was going to jump out of the chair when he was sleeping last night! He also opens his eyes, makes weird noises that sound like Isaiah fussing, and moves his hands while he's sleeping. It can be funny to watch, but scary when you realize that this isn't normal for him. I can tell he's worried - he knows he is acting differently and that he is sleeping too much. You can also tell that it's bothering my Mom (who is also going through some stuff as well).

Please, keep him (and my Mom) in your prayers.


Isaiah's Appointment (with his regular allergist):

Isaiah had a follow-up with his regular allergist on Monday. Basically, it was to go over the labs from All Children's. She was somewhat stunned by the results of the IgE, but it explains so much. She also said that the dose of prednisone Isaiah is on is actually quite substantial for his age and size. So much for a low dose, right? She was a little concerned about it, but understood why they were giving him the dose. She also said that she was hoping that they would go ahead and do the bone marrow aspiration to further confirm the systemic mastocytosis, but (again) understood why they didn't. At this point, it's easier to stick with the diagnosis without the BMB than it is to get the BMB and risk Isaiah having another episode - it's just too risky with his counts.

She also mentioned that Isaiah should probably see a gastrointerologist for the GI problems (especially since the GI tact is always involved in his anaphylaxis episodes). Of course, there are no pediatric GI specialists in the area . . . not even in the county, which means going to yet another hospital . . . in another county . . . say, Orlando. Oh, well, as long as it can help my baby, I'll go anywhere. The scary part is that this could mean an endoscopy and biopsies (I think the allergist was trying to prepare me ahead of time), which means sedation. YIKES! Well, I won't worry about that right now, but just be praying for Isaiah.

I also wanted to mention that the rash that was around his mouth is back. His feet had started to clear up (including the patches on the bottoms of his feet), but the progress has stopped and I have noticed some scaling on the bottoms of his feet, again. He is still on prednisone (and will be until the next appt. at All Children's), so this shouldn't be happening.


I have to say that even though all of this has been happening, things have been good here. Isaiah has been full of personality (and the grumpies have started to subside). Isaiah has learned a few new Christmas songs and loves to sing (or shout) them. =0) His speech still comes and goes and there is little to no explanation for it. Some days, he speaks really clearly. Others, not so clearly. We were told it could be the masto or it could be Asperger's (which will not be fully diagnosed until Isaiah is older). The part that bothers me the most about it is that the masto can affect Isaiah's brain - it can cause mood issues amongst other things; things that we are dealing with right now (the developmental delays).

It's hard to say why all of this is happening, it just makes me thankful for the days we have together as a family and for what we have. Things could be so much worse than they are. Each day, week, month, year is truly a gift and a blessing. Even when things are difficult, the peace and joy we find is amazing - even if all we do is cry in the comfort of God's awesome arms. Just the comfort God brings is amazing. I'm glad He is in control, because I would hate to see things that are beyond His control. I would hate to see how things would be without Him walking us through this. His presence shines through, too - through Isaiah's smile, laughter, and his sparkling eyes . . . through so many things.

Well, that's all for now. I will keep you posted. =0)

1 comment:

Carla said...

It sounds like Isaiah continues to struggle with everything even on the steroids. One thing I wanted to point out is that steroids can cause a rash in some people.

Also, Gavin has had plenty of endoscopies and other tests that involve anesthesia. We have a great protocol that we use whenever he receives any kind of anesthesia, and it works well. I could pass it on to you, if needed.

Can you remind me what his daily medications and doses are? It is for a few reasons, but one of them is that Gavin's brain has mast cell activity, and one med that has almost eliminated the symptoms for him is Atarax. It crosses the blood brain barrier and is an antihistamine, so it has almost taken away the brain symptoms that he used to have quite regularly.

Anyway, I am praying for your whole family, including your mom and dad. Your dad sounds like he is really struglling to.

I am sorry! And big (((Hugs)))...
Love,
Carla