Tuesday, September 30, 2008

Isaiah's Evaluation

Thanks for your prayers - I have felt totally at peace with the evaluation today. I knew there were going to be a few things that he would score a little low on, so I wasn't surprised with the results.

The evaluation went well. We are being referred for further evaluation because there are some developmental delays (he scored a little low in communication and adaptive skills - the adaptive skills are life skills such as being able to dress himself and using a fork and spoon). Gwyn (the lady doing Isaiah's evaluation), is unable to tell us if it's because of high functioning autism - legally she can't. That will have to wait for a bit. Isaiah will be referred on to the next group for further evaluation, which will be scheduled in 4 to 6 weeks from now. After that, we will have a meeting to discuss what services Isaiah may need. I'm not worried about it - as long as my little man gets the help he needs if there is a problem.

I wasn't thinking about all of the times he has anaphylaxed, maybe that has something to do with his delays. In any case, Isaiah is still the same Isaiah that I know - it's not like these delays are fatal. =0)

Gwyn also mentioned that we might have to home school Isaiah because of his allergies (the state will provide a person to teach Isaiah at home . . . I think it's called homebound, but Isaiah will still have social interaction outside of the house). The major concern is the amount of school Isaiah could miss because of his allergies and the masto (and the possibility of him coming into contact with the allergies and masto reactions at school). There has also been a new policy put into effect in our county where students are required to carry and administer their own Epi pens. That sounds all fine and dandy, but Isaiah cannot administer his own Epis. Not only is he too young to really know how to do that (and still keep his wits about him), but his reactions happen way too fast. The other option was to have the school nurse administer the Epis. Well that would be fine if Isaiah could wait long enough for the nurse to get to where he is (I shiver thinking about the nurse being all the way on the other side of the school). Isaiah's teachers would have to be the ones to administer the Epis - his reactions happen way too fast, and time is crucial. This is one thing I will send on to MKO (mastokids.org) so that we can get some more support. Who knows? We might be able to change a policy. =0)

Anyway, back to the evaluation. As far as Isaiah's social skills, speech development (which is tons clearer within the past week or so), motor skills, and cognitive skills . . . he's doing good. He scored really high with his social skills and cognitive development (he showed her that he could add and subtract, multiply a little, count, say his ABCs, he showed her the letters, he knew his colors and shapes . . . Goober!). =0) He even told Gwyn to go wash her hands! =0) Hahaha!! (we usually tell my nephews when they come in to go wash their hands before they play with the toys - Isaiah will break out if they have touched something he is sensitive to). It's a good thing she took that well. =0)

She also had toys . . . yeh, he destroyed her office. Of course, I didn't leave her office without helping Isaiah pick up his mess . . . and she saw just how irritated he gets when you pick up something he has carefully placed on the floor. =0) Yeh, she picked up his "tea party" while I picked up the Lego's . . . he was not a happy camper!

Thanks, again, for your prayers. I cannot help but be thankful for Isaiah and even the trials the little guy has gone through. As much as I hate to see him in pain, there are always blessings in the storms. I have learned so much from Isaiah that I might not have learned otherwise. That doesn't mean that I don't want to see Isaiah healed, but I most certainly don't think that there is something "wrong" with my son. He is Isaiah - nothing has changed about him, just my perspective and plans. But what are my plans, anyway, if they aren't really God's plans?

Well, that's all for tonight from us. =0) It's waaaayyyy past my bedtime!


Nope, Not Me

I did not allow my son (who is not eating very well) to eat potato chips for breakfast because at least it's something to eat . . . nope, not me!

I did not almost oversleep this morning - could that really be me??

I did not secretly turn down the air conditioner (from my Dad's comfy temp of 78 degrees) to 74 degrees . . . nope, wasn't me! =0)

I did not totally empty out the toy box (like Isaiah did on Saturday night) just to find one little yellow train named Molly . . . would I do a thing like that?

(just in case . . . this was when Isaiah emptied the toy box . . . my mess was a little more organized . . . ) =0)

Nah, couldn't possibly be me . . . or could it???

. . . and here's one for Isaiah . . .

Isaiah did not tell the nice lady doing his evaluation to "washy hands!" Nah, that couldn't be my son, could it??? =0)

Saturday, September 27, 2008

Quick Update on My Dad

My dad is home!!

He was finally discharged this evening and finally got home at 7:00 or so. He's here relaxing and feeling a lot better.

The doctors said that his heart is in good condition and was not damaged by the pericarditis. They also said that the reason he keeps getting pericarditis might be from his exposure to asbestos when he worked in the schools. He was given a few breathing treatments while he was in the hospital, but he doesn't have to continue them at home.

He will have some follow-up appointments, so I will let you know more as we do. He was treated in the hospital for the pericarditis and seems to have little to no pain right now (at least he wouldn't say he was still having much pain). He still seems groggy from the medications, but he looks so much better than he did yesterday (see the hospital pic in comparisson with the pic from this evening).

Thanks so much for your prayers!!!


A Little Post for My Little Man =0)

I figured that since there's not much more to report on my dad (who is still in the hospital for more testing and such), I will post about Isaiah. =0)

Isaiah is doing good right now. He wakes up crying a few times a night, he's had some tummy issues, he caught a cold, he still has a pretty bad rash on his back (that was also on his tush), but he is doing good. =0) He hasn't complained too much about pain during the day or at night so increasing the Zantac and using the Benadryl-Tylenol combination must have helped. I am still thinking that the doctor might put him on Gastrocrom (a med he had a while ago . . . it worked, though).

His speech today was much clearer than it has been in the past 2 weeks or so - he's a funny little guy. He has such a great humor and just loves to make you laugh. Even when he's mischievous, when you look into those sparkling eyes of his, you can't help but smile back at him! =0) He is such a sweet boy and I am totally honored that God chose me to be his mommy!!

Isaiah has a few appointments coming up. I say a few, because I'm sure it could be worse! =0) The most recent one is Monday (the 29th). This is the appointment where Child Find will be observing him for high functioning Autism (amongst other things). This is also the appointment where we will be able to start the whole IEP process. I will post shortly after the appointment to let everyone know how it went.

The next appointment (and one we have been waiting for) is on the 10th with All Children's hospital. This appointment is "big" because it will be an appointment to see what we can do (medically speaking) for Isaiah and the masto. In speaking with the nurse, yesterday, Isaiah was initially supposed to be off all meds for at least 7 days . . . 7 days!!!! I said that being off his meds for 7 days could mean that he would end up in the hospital before we got there and she said, "Well, in that case, forget what I said." =0) If they need him to be off his meds for any amount of time, then the doctor may have us stay in or near the hospital so that Isaiah can be closely monitored. Apart from that, I asked what we might expect while we were there (seeing as no one had called to talk to us . . . other than changing the appointment). A bone scan might not be approved by the insurance because it's not a normal allergy & immunology thing. So, if the insurance (which I have argued with them over the necessity of 8 epi pens) decides that this scan has nothing to do with allergies, then we will have to schedule that for another time (with rheumatology or with an MRI place outside of All Children's that is closer for us). As far as the bone marrow biopsy, that is still possible (along with a lung biopsy - there is a possibility that Isaiah's mast cell accumulation is in his lungs, hence the "asthma" that turns into anaphylaxis).

After that appointment we have a follow-up visit with Isaiah's PCP (for the appointment on the 29th and for his check-up) and another appointment with his closer-to-home allergist (as another follow-up). I was also told that Isaiah may have other appointments with other specialists after the appointment with Child Find (this was mostly relating to the masto and schools issue).

I will definitely keep everyone updated through this site, so keep looking! =0)

As for now, I think I will post a few pictures and go to bed. =0)

These pictures are from this past weekend (we went to see 2 shuttles on the launch pads). Okay, so I am becoming somewhat of a space geek, but I find these things simply fascinating! =0) I was even bummed that we might miss the one launch (originally scheduled for the 10th, but it was rescheduled for the 14th). . . and it's a night launch - one of the most beautiful launches. I have some other exciting news regarding this, but I will save that for later. =0)

Okay, so the pictures . . .

Friday, September 26, 2008

My Dad

I just wanted to write a quick update on my dad. He has been admitted to the hospital and the doctors say he has pericarditis again. The doctors are still doing other tests to try and figure out if there is a blockage (mostly blood tests right now) and making sure that his leukemia hasn't gotten worse (or his kidney failure). His blood pressure is doing weird things - he has the low blood pressure (characteristic of pericarditis) but also has periods of really high blood pressure (which is not characteristic of pericarditis).

Right now, he is on pain medication and sleeping. He has stopped breathing a few times while he is asleep, but once the monitors go off he wakes up and is fine (this could be from the pain medication). The doctors haven't explained this to my mom yet, so I am guessing they aren't too concerned about it right now.

Please keep praying for him.

I will give you guys updates as soon as we know more.


Please Pray

I was going to post about my Dad's 67th birthday today (Sept. 25th), but instead I have an urgent prayer request. My dad had a rough day today - rough. He didn't sleep last night at all, but didn't tell us until this morning that he couldn't sleep because his chest hurt. Being my dad, he can be a tad stubborn, he said that it was nothing and that he was pretty sure he pulled a muscle (although later in the afternoon he told me he was thinking it could be pericarditis - something he has had 3 or 4 times before).
So, tonight . . . exactly 4 minutes ago, my dad and mom set off for the hospital - the pain has gotten worse and has spread. He has a fever and has slept most of the day (both of which are symptoms of pericarditis). He had a really rough day, and hasn't been feeling well the past week. Please pray that this is not another episode of pericarditis and that it isn't something else just as serious. Please, also continue to pray for his healing.

And . . . just in case you were wondering . . .

What is pericarditis?

"The hearts sits in the center of the chest and is surrounded by a sac called the pericardium. This sac has two layers, one that fits tightly onto the heart muscle and another looser layer surrounding the inner layer. Inflammation of these tissue layers surrounding the heart is referred to as pericarditis.
Pericarditis At A Glance:

Pericarditis is an inflammation of the lining surrounding the heart (the pericardial sac).
Pericardial effusion is a collection of fluid in the pericardial sac. This fluid may be produced by inflammation.
The cause of pericarditis in most patients is unknown, although many diseases can cause pericarditis (such as a virus/a cold, arthritis, kidney failure, leukemia).
The diagnosis of pericarditis is made by history and physical examination including the presence of a rubbing sound heard (friction rub) with a stethoscope. It may confirmed by EKG and echocardiogram, an ultrasound examination of the heart
Pericarditis is treated with anti-inflammatory medications and by treating any underlying disease.
Pericardial tamponade occurs when enough fluid accumulates in the sac to compromise the heart's ability to adequately pump blood.
Tamponade is treated by pericardiocentesis, removing the fluid with a needle. Sometimes surgery is needed to strip away part or the entire pericardial sac from the heart. "
I will write an update as soon as I hear anything. I will also post an update on Isaiah a little later.

Wednesday, September 10, 2008

Okay, so here's what's going on . . .

. . . Isaiah has been having pain. Mostly at night, but I'm not sure if that's because he's not occupied (like he is during the day) or if it's because that's just when it bothers him. If he does have pain during the day, it's probably the reason why he just sits and stares or he's clingy.

We went to the doctor for this on Monday, and the doctor said to try Tylenol and Benadryl as needed. It is helping at night, but not all night. I don't know why it is taking so long to go away, but I will say that last night was better than the past week or so.

The other thing that happened at the doctor's office was that the doctor decided to observe Isaiah. He had been observing Isaiah for about 45 minutes when he came in to see Isaiah. During the appointment, the doctor was asking a lot of questions about Isaiah's behavior and his speech (which, Isaiah has good and bad days with his speech). He suggested that Isaiah should be observed by a specialist from Child Find (well, originally it was another group, but they don't work with children once they are 3). The doctor is concerned that Isaiah may have high-functioning autism and wants to make sure Isaiah receives the benefits of early intervention.

While I must say that this was shocking, I will also say that even if Isaiah were to have high-functioning autism, he is still the same child in my eyes. If this is the case, then I am happy that they have discovered it now instead of after he is in school. Either way, the observation was going to happen so that Isaiah could get help with speech therapy (and start the process of the whole IEP thing).

I would be lying if I didn't say that I cried a little - and felt totally overwhelmed. But I can say that in speaking with a few friends who have experience in this area I feel more peace about all of this. Of course, I can't exclude the peace that God brought either. At this point, whatever God's will is, whatever He has planned for Isaiah, I am more than okay with it.

I still haven't heard from the lady that will be observing Isaiah, but I was told that they are extremely busy this time of year. Hopefully I will hear from her soon. It is possible that all of this (the speech issues and even some of the behaviors and mild development delays) are caused by the masto . . . at least his speech problems. I have been just thinking that since he was a boy, his speech just hadn't matured yet. However, I read that mastocytosis can cause speech problems . . . it's a long explanation, but one place it's explained is on mastokids.org. I have heard that Isaiah has a "thick" or "heavy" tongue from someone who is a speech therapist . . . I met her at a birthday party. I didn't really think too much about it then. Either way, Isaiah will be okay.

He is surprising me with the things he is able to do - like add, he's learning to subtract, he counts to 30, knows all of the alphabet and even what the letters look and sound like, can read a little, he is learning to spell (and he can spell wolf thanks to Peter and the Wolf - which he LOVES to act out), and he can even tell you the first letter of some words. He's amazing! Now, we just have to work on the whole potty training thing, the dressing and undressing himself thing, some fine motor skill things . . . =0)

Isaiah is such a little blessing! He is so happy, most of the time. =0) Come on, he is a toddler . . .eh-hem . . . preschooler. I think his terrible twos are starting a year or so late . . . =0) Who knew? But he is such a wonderful little guy to be around. When you're sad, he can make you laugh. When I need a hug, he's got the best hug of all! When I'm tired, he loves to attack (he loves to tackle and sit on me). =0) He's the coolest preschooler I know (but of course, I'm biased)! =0)

Well, that's all for now . . . =0) I will post an update on my dad after his next appointment.