Progress Report... March 15, 2011 (Tuesday)

 I'm telling you, Aiden never ceases to amaze us.  He's been learning and growing so much the past month.  We were warned by numerous people how incredibly difficult it is to get a child who has never eaten to get past the oral aversion and to teach the child to eat and drink by mouth.  We were ready for the challenge. Luckily, Aiden never had an EXTREME oral aversion, we've always been able to touch his mouth, teeth and tongue.  I've heard some kids freak out at any attempt at going near the face.  So, that was a good sign.  We also noticed that Aiden always took an interest whenever one of us would eat or drink in front of him.  He would often take our empty cups and put it up to his mouth and pretend to drink. (VERY cute!) That was a GREAT sign! Ever since we had Aiden's swallow test done and they gave us the go ahead, we followed our speech therapists instructions.  We were actually a little relaxed about it.  Soon, when I would have yogurt, he would grab my finger (with a dab of yogurt on the tip) and bring it to his mouth.  His eyes would light up when it would hit his tongue. We got Aiden a baby spoon and made sure we had bottles of food ready.  We would let him smear the food around (good times!) and every now and then, he would put his fingers in his mouth.  It wasn't till recently  that I used a spoon and actually fed him baby food.  At first, he would just go thru the motions.  Then one night...he swallowed!  In Aiden's world, that was monumental!  He opened his eyes wide, smiled and applauded.  Even HE got the significance.  Once I told our main nurse of his success, she really began trying to feed him daily.  The last few days, she told us that he's actually been eating...2 or 3 teaspoons at a sitting.  Swallowing and everything!  Our speech therapist was especially excited today because not only did Aiden show her his new found eating skills, he tried drinking out of a cup (with strawberry and banana nectar in it) and he did it 6 times!  Sandy, our nurse, told us that her and the therapists were SO thrilled, that they were clapping and giggling like little school girls.  That's one of the things I hate missing when I sleep the day away.  At least I know Sandy is like an Aunt to Aiden...she loves these moment like I would.

This video (above) was taken a couple days after this blog entry, but it fit in so perfectly with the 'eating' theme.  My mom was watching all of this via Skype,

in case you are wondering why you hear her voice... :-D

Aiden has had a few appts last week...he visited Dr. Hotaling (his ENT Specialist) and his surgeon, Dr. Patel.  When Dr. Hotaling saw Aiden, he made his usual comment, "who is this kid?", because Aiden looks so incredibly different than he did just 6 months ago.  Dr. Hotaling was the surgeon that put Aiden's trache in when he was 5 days old and always told us that it was the hardest tracheostomy he ever had to do.  He also always said Aiden's micrognathia was the worst he's seen.  So I guess Aiden's results from the jaw distraction blows him away.  During this visit, we discussed the findings from the ENT (from Childrens Memorial) exam while  Aiden was 'under' to have his jaw distractors removed.  He didn't even look in his ears. We also discussed plans for the future.  When Aiden goes in for his hand surgery  on April 8th, Dr Hotaling wants to do a 'bronch' (scope to check trache, etc). He also wants to see his airway and how much room the jaw distraction gave him, and to finally see what kind of cleft palate he has.  We have never been able to see that.  He was thrilled to hear of his eating success...he was the one who warned us how difficult it would be. Aiden also had a pressure test to see if the tubes in his ears were in working order...and they were. Aiden, of course, freaked out, even though it was quick and painless.  I wish I could erase his fear of EVERYTHING that no doubtedly was caused by his craniotomy terror a year ago.  One thing that Dr. Hotaling instructed us to do is, every now and then, to try to put our finger in front of Aiden's trache to get a sense of how easily he breathes through his mouth...which is incredibly encouraging.  It sounds like he is very optimistic that Aiden's trache will come out in the pretty near future...after his hand surgeries and cleft palate surgery.  I get so excited just thinking about it! 

The next day was our visit to Children's Memorial to go see Dr. Patel, the surgeon who did Aiden's jaw distraction.  This was his post-op follow up visit.  Aiden was so funny in the waiting room...he's a little social butterfly!  He's not shy, that Luv Muffin. He played piano for anybody that would listen...quite frankly, no one had a choice.  They listened and liked it! teehee. Aiden's visit with Dr. Patel was quick and painless.  First, he had has photo shoot.  They had the cutest little stuffed ducky that squeaked. I made Aiden look where he needed to look.  Even got him to smile.  After a short wait, Dr. Patel came in and took a look at Aiden, he was still very pleased.  Then he told us that he wanted to use Aiden for publications...he is a teacher at UIC.  He always tells us that Aiden is an inspiration!  We asked him what we should expect next.  He want Aiden to have a ct scan to see his bone structure post distraction, and then said he wants to watch and see how he developes.  He basically told us that he was done with him at this point.  We asked him about Aiden's limited  jaw movement and opening, and he believes that it's something we would have to work on by stretching.  Of course he wants to make sure it's not jaw bone/joint related first. But he says he doesn't want to start anything yet because Aiden is healing and the stretching  usually works better at a later date. That would be so great if no surgery was involved!!!  Then Dr. Patel says...'now we work on you!' (referring to me).  I haven't told many people, but I was referred to Dr. Patel to correct some work that was done on me 25 years earlier.  I have recently been dealing with pain due to my chin implants pushing through my gums into the roots of my teeth.  I think he has big plans for me...and for someone who was never 100% thrilled with the results of the implants done many years ago, that's both terrifying and VERY exciting.  I'm not sure when this will take place, but I get the feeling it will be soon.  I'll share more as I learn more.

So, that's the latest and the greatest. Aiden is growing and growing.  Today he kept practicing standing on a chair and stepping off...and 'saying' TA DA!!! while throwing his hands in the air.  I've never seen a child 'practice' every little thing like he does.  It's so adorable!!!  My mom finally got herself set up with Skype.  It is so wonderful!!! The first night we got her going, Lynette, Hannah, Ava and Derek were there, as well.  It was like we were there!!! Aiden was apprehensive at first.  Then he started applauding and hamming it up.  He loves an audience!  So, every night, I video call my mom.  It's so incredible.  She's coming to visit in April...I can't WAIT!!! And now, Aiden should recognize her immediately.  Also, lately, I've been trying to work on my sleep issues.  Aiden has been going to sleep so early lately. Last night was 8:30pm...and tonight was 9:30pm!!! If you know Aiden, you know that his usual down time is 12:30 or 1 am.  He has been skipping his afternoon nap.  I think he has finally turned that corner.  WOOHOO!!  Now if only I can get 'over it', I can try to get SOME sleep during the night, and maybe I can get up earlier in the day.  I have been talking to some mothers of children with traches, and they've been helping me realize that it's okay to try to sleep, especially now that Aiden is older and less dependent on his trache and me.  I find it's easier said than done.  Last night I was able to sleep 2 hours over night, but that worked out because Aiden woke up by 5:30am. Melatonin and reading seems to help me fall asleep easier. (right now I'm reading 'Time Traveler's Wife'....my second attempt at finishing the whole book)  So by spring, I hope to be able to wake up around noon.  That's ALL I ask!!! 

Well, I guess I should wind down and try to get some sleep.  I have been syringe feeding Aiden as I type.  Since he's been falling asleep earlier, he's been missing a meal.  And of course, I can't go without mentioning that today was Ivan's 13th birthday!  He's a teenager, now.  WOW!  Good night, everyone!