Heath's Journey 4/21/10

mujul79's picture

Where to Start? I think I am going to do this blog in categories.

Post op visit:
It went well. He was all healed and no more need for pain meds. He was also taken off the every 4 hour treatments and now we will only use then as needed. The fear is if we do them to often and he has a real attack the meds won't work for him. Only advice ENT could give me was wait and see what the sleep study says, before changing anything.

Speech/ASL/Hearing:
On March 22nd Heath went and had his hearing aids checked and set to the new settings using the results from the ABR. He also sat in the testing booth and we found out he is hearing at normal ranges with the aids on!!! He is so cute and starting to talk and make cooing sounds that and should like he is singing the tunes of songs he has hard. Current ABC's, patty cake, rain rain go away and itisty bitsy spider are ones he likes, and have been added on to his all time fave Row row your boat. He has also picked up more ASL signs in the last few months. More, eat, water, done, nurse, are the ones he uses the most.

Today he even showed Janie our GA PINES support person where his nose is and pointed to ours too, he brought me 2 toys when asked and all using only verbal commands with him!!!

Physical Therapy:
On April 2nd Heath's new leg braces where put on him for the first time. Right away he was walking holding on to someones hands for a few steps. It has even improved his crawling because it keeps his clubbed feet from getting in each others way. This new found ankle strength with the braces on has also inspired him to learn to climb stairs so he is now doing this at the park and sliding down the slide without help. This is such a delight to see and he just laughs and laughs to do it. Walking in the last weeks, he still has to be coxed with food to push his walker even just a few feet and is not balancing unless holding on to hands. But the amount of steps has increased a ton now what was just a few steps is more like 20 feet when he is holding onto me. He likes it best when we face each other and I walk backwards. He is becoming a pro a cruising the sofa to get around the house so defiantly moving right along. Crawling is still his FAST mode of transport at 17 months.

The first week he only wanted the braces on 2 hours a day and would cry if I left them on longer. Last week he was closer to 3-4 hours each day before asking for them off and today he left them on 9 house and never asked me to take them off, I just did when I got him ready for bed. WTG Baby Heath Bar!!!

Sleep:
Right around the first of the month I started teaching him to sleep in the pack and play instead of the jumperoo. The first 2 nights he was not happy about it and woke often but now he sleeps all night in it. I was hopeful this would help him sleep during the next sleep study.

On April 9th Heath had another sleep study. This time he did well letting them put everything on him and I was even smart and brought his Signing Time DVD so the atmosphere in the room as similar to at home. We had his pillow and blanket and to my shock he was asleep by 10pm and slept until they woke him at 5am!!! They told me they did not need to turn the O2 on at all but not to change anything util we heard from the ENT.

His last alarm down load only showed 2 events. But I have to get it exchanged they are thinking it is not working right because the dates where all off.

Breathing:
Right around the 4 week mark after the surgery he stopped letting us put the O2 on him 24/7. During the day he just wanted to play and would not keep it on so I gave up trying and just kept my eye on him. Then after the sleep study I was more relaxed about letting him go to sleep without it and just put it on him after he was sleeping already. He has had some congestion but the pollen is BAD this year, I brushed that off.

Today I got a call from the ENT nurse saying the Dr. has reviewed his sleep study results and it is still abnormal. I was not expecting that news. We go in on Monday to see what all that means. I don't know what I was expecting but I guess because of how well he has been sleeping and his own unwillingness to use the O2 I had hopes of better news, but maybe it is ok, she could not give me details. He will be seen by the ENT, GI and Airway doc's then.

Fun stuff:
I took him to the pool once last week and he loved it, I was teaching him to sit on the side and jump off his butt to me. The kids love him to death sometimes to much hugging him until he starts to get upset.

So that's it lots of progress for Heath in the last month. A big milestone for us is he can nurse laying down now and that is saving us both lots of sleep. Until this point if he needed to nurse at night I had to sit up for him.

Ps. I had my own surgery 3 weeks ago and they found a mass in my fallopian tube. The testing came back clear of cancer and recovery went well. I am feeling much better then before the surgery, because the pain and heavy bleeding is gone and so I have a lot more energy to meet all his needs.

We will also be moving to NY in 8 weeks if anyone knows any childrens services that could help him let me know.

If you ever read this some day. I love you so much Heath.