When things are going rough, it's easier to focus on the negatives rather than the positives. Today, even though we received very little encouraging results, we must look for the positives. We have a paediatrician in St Thomas, who we feel very blessed to have. Marije (our respite worker) came along to St Thomas, just in case Jacob needed help while I was driving. Thankfully he calmed down both times several minutes into our trip. Marije was very impressed with Dr Kerr! Paul and I have always felt like God provided a paediatrician who understands Jacob, us, and our beliefs. He is church going, and brings out things from the bible on a regular basis. He has a lot of common sense, and takes what's in Jacob's best interest first. We have much to be thankful for!!
With Jacob's health, it's difficult to pinpoint exactly what's happening on the inside. Several things were discussed... first, his increased irritability. In 2 1/2 days, he slept 6 hours (yes, that's day and night.) Last night he finally slept ok when he slept 6 hours. That's still not enough. He didn't fall asleep today until 8:00pm. He can't keep this up!! Even when he's awake, he's very restless. So, the result... increase one medication he is already on. Even though we've always been extremely cautious with any meds, we truly don't know what else to do. I possibly can't hold him for 16 hours every day.
One medication we could add to his regime acts as a sedative. This is a scary step. I'm not sure we are ready for that step yet. We'll see what happens with the one medication being increased. We need wisdom from above.
Jacob has been doing a lot of mouth/tongue movements, which is a newer development. Dr Kerr is wondering if they are seizure related. He has ordered another EEG, to monitor Jacob's brain activity.
Last Saturday evening, Jacob had a time when he was asleep that his respiration's were very low (about 5 per minute), his colour was very pale, and I could hardly feel his pulse. This lasted for about 20 minutes. We were at a family gathering, so we kept it quiet that we were so concerned. Paul was holding him, and was keeping a close eye on him (with my eyes and my mom's, not leaving him for long either.) After the 20 minutes his coloured improved and his respirations increased. He didn't wake up for hours though, plus he slept all night!! Very concerning. Dr Kerr was wondering if that was also something to do with a seizure. It wouldn't be a surprise, seeing that he has constant irregular brain activity. So far though, every EEG he's had, has just shown the irregular activity, but no seizures. The doctors office was going to put it as a priority to have the test done.
Also, the first part of the appointment is just a regular check - weight, length and head circumference. Well, regarding his weight, he was up 200 grams, which the doctor was happy with. That is over about 2 - 2 1/2 months. The gain is small, but it's not a loss.
He is truly keeping up with his dutch genes to be tall, because he is still maxing the height growth chart. That actually means he's getting thinner:(
One of the more important parts of the visit is his head circumference. It doesn't tell us everything, but it helps us understand things somewhat better. His head circumference didn't get any bigger since January. That might explain why things are where they are - his brain isn't growing. Hopefully the brain cells aren't dying off! Tough thoughts!!
I wish I could make his brain better!! I wish I could take away his pain and discomforts! I wish we could all understand him clearly. I wish he didn't have to be on half a pharmacy worth of medications. Our road with Jacob just isn't going to be that way. It goes totally against our humanly desires, but it's in God's perfect plan. Jacob is so unwell, yet, is not tempted to sin as we are. He is spared from so many temptations. May God provide peace to Jacob's soul. Even though on earth, he has so many discomforts and afflictions, God can give Jacob a soul that is at peace with his maker. May that be our constant hope and light during these dark days.