Tuesday, November 25, 2008

These shoes were made for walkin'

Noah is doing really well with his new orthodics and really seems to like them. Right now is to be wearing them at least two hours a day when he is most active. So far, we haven't had a problem keeping them on his feet, although he is quite intrigued with the Velcro straps.

He also had his evaluation with First Steps this week to review his need for services. Once again he passed with flying colors on his fine motor skills but is still showing an obvious delay for large. No surprises there. They did however recommend introducing a speech therapist as he is showing a delay in speech and social skills. I knew this was coming but we are not concerned about it. I tried to tell them that he is quite fluent in some foreign babble that I haven't quite figured out yet. Apparently they are more concerned with his English vocabulary that only consists of just a few words. :) Brian and I both feel that he is behind everywhere else, it only makes sense that he would behind in this area too and don't really feel speech therapy is necessary, but if they think it will benefit him, we won't stand in the way. As long as adding another therapist to the mix doesn't affect his anxiety, we will give it a try.

His physical therapist and I have been noticing that Noah's hips have been "clicking" for awhile now. We were hoping as he began standing and weight bearing more that this would improve but he continues to crack in his joints alot. I spoke to U of M about this and they want to do some hip x-rays while were are in Ann Arbor next week. We will have these done on Tuesday after some of his other appts and it will be read by one of the Ortho Dr's there.

I had a Dr appt for Baby Baker today and all is still well. Blood pressure - good. Heartbeat - good. Dr Bhat said no reason to do an ultrasound at this point. Man is this kid getting boring or what? :) Isn't it great?! I will go back in 3 weeks for my glucose test and then will be seen every two weeks from that point.

Zane is doing great although he was pretty disappointed to hear he would be out of school for a few days for the Holiday:) This is another reason that I love being home, that I can spend that time with him when is out of school. Fortunately for now he is still at the age that he actually likes spending that time with me! He is still so great with Noah but I can tell his patience is starting to wear thin when he starts asking me when Noah's bedtime or nap time is. If Zane is home, Noah has to be where ever he is at all times. He is fitting that "little brother" role quite well!

Tuesday, November 18, 2008

To tube or not to tube....

Noah is still sick but overall, handling it pretty well. He is coughing quite a bit, mostly at night but still has not had a fever. I took him to the Pulmonologist today to see if he was clear for tomorrows procedure. He told us to continue the extra breathing treatments and started him on steroids. He felt confidant that for no more than Noah would be under anesthesia he should do okay with the procedure. So at that point we were planning on heading up for the g-j placement in the morning. When U of M scheduling called they reviewed Noah's symptoms and after talking with anesthesia determined that it would not be a good idea. After Noah's last stunt during the g-tube resite they want to make sure he is the picture of health before putting him under again. Normally they would reschedule out 4 weeks of an illness but based on his intolerance to feeds and weight loss they are going to do it in 2 weeks. This will actually work out a bit better as he already has a pulmonary function test scheduled up there on the 2nd of December. We will now just stay overnight and do the PFT on the 2nd and the g-j on the 3rd.

In the meantime we will just keep doing what we are doing with him. I received a call from his PT that his orthodics are finally in so he will be trying those out this week. Of course they are camouflage so he will be the picture of coolness with his new shoes. More appointments next week also, Noah will have his yearly evaluation with First Steps to evaluate where he is at with everything and if any changes need to be made. I have an ultrasound on Tuesday for the baby. It's been 4 weeks since our last appt so I am anxious to see how things are going. The continued baby acrobatics and the fact that I am getting to be ginormous are good signs to me, but it's always nice to reassured! We are looking forward to the Holiday week! It will be great to see the family, and Brian and I are already fighting over who gets to hold our nephew Liam first!

Once again, another year that we have so much to be thankful for....

Friday, November 14, 2008

Sick and tired of being sick and tired...and another trip to the OR for Noah

It seems like we have all been sick, passing it back and forth for the past few weeks. I'm not sure who started it, but we have all had a cold, sore throat, sinus infection, ect. Some of us have had it twice! This week was Noah's turn and he started Monday with diarrhea and a runny nose. It has now progressed into his chest with a cough and continued cold symptoms. I called his pulmonologist and they have us giving him breathing treatments every 4 hours followed by 15 minutes of chest percussions to break up whatever is settling into his lungs. He has not had a fever which is good and other than the occasional cranky, "hold me hold me" phase, he is in pretty decent mood. His Dr expressed his concern again about Noah being denied Synagis for RSV and reminded us to be ultra cautious and mindful of winter quarantine. Right now it seems like there are more germs circulating INSIDE our house rather than OUTSIDE!

Well after a month of experimenting with the g-tube feeds we have gotten nowhere. We were hoping to start building a hunger cycle and instead Noah's oral feeding has regressed significantly. We tried weaning the continuous at night and he lost weight like crazy. He continues to be uncomfortable at night and retches during many of his boluses. The clinic nurses called this week to check up on him and we had to report no progress and no weight gain. So after talking with the surgeon again it looks like they are going to put the g-j back in. Not sure if you remember, but we had to take it out and put the button back in because the tube stopped working altogether, both the g and the J. We were hoping this would work and we wouldn't have to have another placed, but we all think it is best. He ate so much better when the feeds ran into his intestines and overall, he was a much happier boy. The procedure is planned for next Wednesday. He will have to go to the OR under general anesthesia but should go home after the tube is placed. If he is still having respiratory issues through the weekend we many have to postpone until he is up to par.

Aside from these issues all is going well and I can't believe Noah will be 18 mos old soon! Time really does fly! Zane has been the healthiest out of all of us these past few weeks and doing great. We just finished his new "camo" room and it looks great! I will post a picture once we get his curtains done. He is so busy with basketball and cubscouts but having a great time in both activites. He came home today from school and wanted to go outside and build a trap. Silly me, I asked what he was intending on catching here in the great state of Indiana. "A turkey for Thanksgiving, duh". I should have known. He even had blue prints drawn up. He dressed head to toe in camoflaugh and went outside with some rope, a rock and few other random objects. One to many episodes of Survivor Man for this boy. I will keep you posted on that one!

Sunday, November 2, 2008

Our child, the Drama Queen

So another restless night for Noah last night and finally came to screams about 7am. When I went in to get him, he was soaking wet with formula and not very happy about it. In the dark I could obviously tell that his connection had come loose somewhere and I began searching for it. I finally turned the light on to find his g-button dangling from the end of the extension and Noah was wireless! Not good! I had last checked him at 4am and all was well so somewhere between 4 and 7 his button came out. We were praying that it was sooner rather than later because these sites can close up in a matter of minutes. When we tried to put it back it, it wouldn't budge. We couldn't get anything back in through that hole. So, we cleaned him up, packed him up in the car and headed for the hospital. The ER doc said he would try and work it back in but if he too wasn't able to get it in, it would have to be replaced under sedation or surgically. After a very long couple of minutes for Noah and nothing delicate about it, the Dr successfully got it back in. I am sure it was very unpleasant for Noah, but better than the alternative. We were back in the car shortly after and headed home!

We also found today that Noah has lost all of the good weight he put on in the last few weeks in just a few short days. So this means we are back up to full feeds at night again to compensate. His appetite has been horrible this weekend (despite the Halloween candy!) so the weaning was not having an affect on his hunger cycle anyway. All in Noah's time. We will get there eventually!