Friday, June 25, 2010

My Baby Turned 5!!!! =0)

I can't believe that 5 years ago (already!!!) you came into the world. I prayed for you for so many years, and now you're here - God's promise to me . . . and so much more. You have taught me so much about life and you have helped deepen my relationship with God. You have taught me more about what it means to follow and rely on God than I ever learned before you were born. You are so special to me, my little hero - there isn't a day that I don't thank God for you! I pray that God continues to use you, that you grow in Him, and grow closer to Him with every day you're here on earth. May He continue to bless you and give you joy, peace, and good health.

Happy birthday, little man! I love you!

Wednesday, June 23, 2010

Happy 48th Anniversary . . .

. . . to the most wonderful parents!!!

Praying for many more years full of love, blessings, joy, and peace.

You guys are such blessings - love you so much!

Tuesday, June 22, 2010

MRI - brace yourself, long post. =0}

Well, to catch some of you up who haven't been on Facebook . . . =0}

Isaiah had an appointment with a neurologist this past Thursday. At the appointment, the doctor noticed (as did I) that Isaiah has no reflexes in the lower half of his body. He tried several times to get Isaiah's muscles to respond, but to no avail. Upon further examination, the doctor noticed that Isaiah was inflexible (with limited flexibility in his ankles) and his hamstrings are tight. We had noticed that Isaiah walks on his tiptoes, and he didn't begin to crawl because of his stiff little legs, but had not really thought too much about it . . . now we know.

However, the doctor (and I) want to know why. Especially since his upper body is so loose and he has less muscle tone in his upper body. He is also looking for causes of Isaiah's autism symptoms. Basically, these tests will give us a further diagnosis for Autism (high-functioning/Asperger's). We will also be seeing a geneticist sometime in September (there was an appointment for this week, but . . . I'll explain in a minute). =0)

However, there is a bit more than that going on. Generally, with autism, people are flexible and loose (like Isaiah's upper body) - they don't have the tightness and loss of reflexes. So, that adds some new speculations as to what's going on with Isaiah. The two possibilities are encephalopathy (in short, a form of brain damage) and spastic diplegia (a form of Cerebral Palsy). Now, I know that Isaiah is the same child I have always loved - the same with or without these tests. However, I would like to know how to help him - hence the testing.

That brings me to the testing. =0) Isaiah is supposed to have an MRI . . . with sedation (along with blood tests being drawn during the MRI). If you have been following my blog for at least a year, you know that the last time Isaiah had a procedure with sedation he anaphylaxed twice in one week - the episodes were 3 days apart, 24 hours after the procedures. We still don't know if the anesthesia or the procedures (endoscopy and sigmoidoscopy) caused the anaphylaxis.

Initially, Isaiah was to have the MRI today at the local hospital. However, at the "pre-op" physical yesterday, Dr. B. decided that it was just too risky to be done there. I can tell you, I shared the same sentiment. =0) So, he had the MRI rescheduled at Arnold Palmer - the same hospital that Isaiah had the last procedures. It's a children's hospital and a trauma hospital at that. I am relieved and a wee bit freaked out at the same time - his exact words were, "because of the risk of severe or fatal anaphylaxis . . . " Ugh, no matter how much you know that anaphylaxis can be fatal, it's still hard to hear . . . of course adding on top of that the speculation that your child has some type of brain damage doesn't help . . . and the whole eosinophilia news (I was told that eosinophilia can cause organ damage and that Isaiah's body is just attacking itself - that was in the conversation with the allergist . . . it just took a bit to sink in).

So, what caused this suspected brain damage? No idea. Maybe the multiple times Isaiah has anaphylaxed in his life, maybe his large birth weight, or the fact that something may have actually gone wrong during labor - there's no way to tell right now. He's the same Isaiah I have always known, so I'm not mournful. I just want to know what it is and how we can help him. Some of his leg pain could be coming from this - I just want to make it stop for him (he hasn't been sleeping well the past week and some change because of leg pain).

If you can't tell, I'm honestly just worn out. I'm not necessarily sad, just tired. Not being able to make his pain stop makes it worse . . . and knowing that we still don't have all the answers for all of Isaiah's health issues bothers me.

I know that God is in control and that He is watching out for Isaiah in ways that I cannot. He knows all the answers and understands Isaiah's body better than I can. I'm so glad that I can rest in Him, confident that He's able to take care of all of this. I am just so grateful that He has blessed me with this little guy and given me an opportunity to learn more about how to depend on Him.

I will keep you posted, as always. =0) As for now, Isaiah's appointment is in August, but we are on the list to be called if there is a cancellation . . . talk about being ready at a moment's notice. =0) Please pray that we can get our appointment sooner and that everything goes smoothly - the waiting can be rough. =0}

Oh, by the way . . . Isaiah, my baby, will be turning 5 on Friday (at 6:23 pm, to be exact)!!! =0) Trust me, there will be a post. =0)

Wednesday, June 9, 2010

Lab Results . . .

Much to Isaiah's dismay, we had the labs drawn Monday afternoon . . . he was not a happy camper (as he told me several times while we were there), and I had to bribe him with Lego people. =0) Anyway, the labs are back, and Isaiah has 3 new Star Wars Lego people to add to his collection (which were supposed to be saved for his birthday). =0)

I must say that my heart sank when the doctor called - she wasn't supposed to call unless something was wrong. Her calling, especially so soon, just made my mind whirl a bit. She started out saying, "I have the lab results," and continued to talk a little. She sounded so upbeat, but that really didn't sink in until she said, "everything looks normal." Yeah, Mommy's heart had already stopped beating, so the eternity it took her to get to that part didn't sink in until a few minutes later! ;0) His platelets are within a normal range and his kidneys show no signs of infection or damage! God is awesome! I am relieved to know the lab results - I was thinking, "two weeks????" =0)

The "bad" was about his eosinophils . . . they are still very high (eosinophilia). Not unlike the past tests, so I wasn't surprised by that (honestly, I hadn't thought about them being high, low, existent or nonexistent). =0) As far as the petechiae . . . well, the high eosinophil count can cause that, we just have to watch him for anything more unusual (his petechiae wasn't just from scratching, it was in random places all over his body). Just in case you're curious about high eosinophil counts and petechiae . . . don't do a Google search. I wish I hadn't. =0} Too much info. and a tad scary. Isaiah is healthy and his labs aren't showing anything scary, so he's good. =0) So much for just trying to understand what "eosinophilia" means apart from too many eosinophils! =0} (Eosinophilia actually goes along with systemic mastocytosis . . . another reason why the labs were no surprise)

I forgot to mention the last time I posted that Isaiah finally gained some weight! At the appointment last Friday, he's at 47 pounds . . . . and he is at 48 inches! =0) He's finally tall enough to ride the flight simulator at Kennedy Space Center (poor guy seemed stuck at 47 inches for a while) . . . but we'll still have to wait for cooler weather to go back . . . maybe September. =0) I was totally praying for him to grow so that he could ride the thing . . . he was so disappointed when we went to ride it and he was too short. I can't wait to explain it to him . . . but I want to keep it a wee bit of a surprise! =0) I'm soooo saving up for a little astronaut outfit for him when we go there (yeah, when he's older he'll be mad at me - 'cuz you know I'm going to take pictures - but, secretly, he'll be happy). =0)

I just had to share the news about Isaiah's labs with you guys - I know you guys had been praying. Our God is so amazing - He knows what He's doing. Even if we haven't seen Isaiah's full healing right now, we can still see God working in the scary situations that arise with Isaiah's health.

Friday, June 4, 2010

Quick Post . . . =0)

I know, you're thinking, "quick post? Yeah, right!" =0)

Maybe you're right . . . I should think realistically. =0)

Anyway, Isaiah had an appointment in St. Pete this morning. We started our trip yesterday and encountered severe storms in Orlando - almost constant cloud-to-ground lightening, blinding rain, loud thunder, aquamarine patches in the sky, hail . . . but we arrived safely without incident (God is our protector).

The Allergy/Immunology/Rheumatology Clinic shares a floor with Nephrology, Hematology, Oncology, and Nutrition at All Children's. We usually see some really sick kiddos there - it always tugs on my heart and makes me thankful that Isaiah is in as good of health as he is in. Seeing their faces just breaks my heart. One particular case, today, just really got to me. Isaiah did not want to be there, today - he doesn't want any more sticks. =0( So, as we were going back for the appointment, he was saying, "NOOOOO!" One young lady (who was maybe 13 or so) commented that she didn't blame him, she didn't want to be there, either. She had come out of remission and was "losing" her battle with cancer. It broke my heart. I wanted to give her a hug so badly and just make everything okay for her. Thankfully, she does know Jesus - I know that He can make everything okay for her. Better than that, He can make everything great for her. Until then, I pray that she doesn't have to feel pain and finds peace, comfort, and healing through Him; the only one who can provide it for her. I didn't catch her name, but please keep her and her family in your prayers - God knows who she is and that's the important part.

Isaiah is doing well, just the usual flushing and such (and not sleeping, leg pain, the usual for him). He has developed petechiae, again. I noticed it yesterday morning and it has gotten worse since then. The doctor saw it and has ordered the usual blood test just to check. He has quite a bit more of it than he did last time. He has patches on his tummy, on his shoulders, neck, under his arms, on his upper arms, upper legs (with newer spots on his calves), and his tushie. At least it's not itchy like eczema. =0) While the doctor was examining Isaiah and his dots, he told her, "you have the peh-tiki-way on your back!" =0)

Because of all the swelling that Isaiah has been having, she also ordered a test just to check his kidneys . . . just to make sure they're working the way they're supposed to. He has never had a UTI or anything, so I'm sure that one will be just fine. She just wants to make sure - she's rather thorough.

Apart from that, it was just a regular appointment at the AIR clinic (I think that's so funny - Allergy/Immunology/Rheumatology = AIR). =0) The doctor finished the documents needed for school this year. Just in case you missed the school discussions, Isaiah's doctors do not feel that school is the best option for him right now - at least the going to the building part. Basically, the school district needed the doctor(s) to fill out a form stating why they want him on homebound school for the next year. All of that is completed and ready to be sent in. =0)

I have already started the sign-up process for K-12 (I was worried that homebound, which offers a teach twice or so a week, wasn't going to be beneficial for Isaiah). K-12 seems to offer the best option - allowing Isaiah to work on a computer for some of the time, meet with a teacher every day (online - web cam), and learn on his level and at his own pace.

Well, I think that's all for now . . . it's beginning to storm outside, again. =0} Ah, life in Florida during the summer. =0)