6 Months (really 8) and a high five!!

Talking (writing) about the babes is my most favorite thing to do. Finding the time/energy to do it at the end of the day is not my most favorite thing to do. That is why the blog goes weeks without an update ... I have lots to say but not so lots of the time it takes to upload a picture, organize my thoughts, etc.

I did not update on Jackson's 6 month anniversary home so I will do it now on his 8 month. Jackson is a living breathing miracle to everyone who has had the pleasure of meeting him. For those of you that remember, Jackson is currently a silent baby but all it takes is one of those huge smiles and a bat of his eyelashes and you are in love. It will amaze you how fast you learn to read his face or eyes and you know without a doubt what he is trying to tell you. He recently picked up a new therapy (occupational) and she was doubtful about his case initially due to the distance to our house and his "rating" (yes the state rates babies) at his evaluation. After their first session together she told me that the baby she saw was not the baby she was prepared for, he was so much more in every aspect that anything that was on paper about him. Then that night she called me from her home to tell me that she could not stop thinking of him and that she knew that God had led her to take his case because SHE needed him in her life. Seriously folks - people are IN LOVE with our baby. Anyway, back to the subject at hand...

Medically Jackson could not be in a better place. He breaths on his own 24/7 which is the best we could hope for at this point. He requires a tiny bit of oxygen when he sleeps but it's nothing to fret over. We are down to two medicines, one to control reflux and one to strengthen his lungs. In September he spent a few days at CHOP and we learned that his airway has grown and is healing itself nicely. The hope that he will not need airway reconstructive surgery is still in sight, his surgeon is very pleased by what is happening. Not everyone gets this hope. If a baby can outgrow the issue on their own most of the time it is by age 2. We will know more this time next year but for now it's out of our heads.

When Jackson came home developmentally he was classified as a newborn. An 8 month old newborn. He had no muscle tone in his body whatsoever. Today he can sit up (not perfectly but I will take it) and hold/reach/play with a toy. He can also bend over at the waist, grab a toy, and sit back up with it. These things are huge steps because he has the weight/body size of a 16 month old, but the strength of a 6-7 month old. If he is holding onto something he can hold his weight on his feet (fake standing). He jumps like crazy in his jumper and he is starting to take small steps backwards in his walker. Again huge. Until two weeks ago there were sentences floating around my house like "maybe he will walk..." now it has turned to "when he walks...". He reaches for toys, he can take things out of a container and sometimes put them back in. And just this week he started giving high five. It was enough for me, Nicole, and our nurse on duty to jump up and down and scream. You have to watch very closely for him to do something, his high five isn't a open handed smack. It's more of a some fingers extended very slow touch of your hand. But that's how he starts things...slow and unsure until he is confident.

Two personality traits are becoming promienent right now and in most ways it's more good news. Jackson is aware of everything around him. If you introduce something new into his world he finds it and is obsessed with it until he figures it out. If he hears a noise in the next room, if he gets a new toy, if a toy doesn't make a noise like it has in the past (b/c the batteries are dead and we can't get around to replacing them!), he picks up on every detail. HUGE PEOPLE. Second, he is a strong willed (we knew this) stubborn little boy taking control of his world. Jackson doesn't have a voice so we have to give him ways of having control. We now present him with two toys to choose from, when he is blatantly "telling" us to stop what we are making him do we stop. We have to respect his world. He knows what he wants and even without vocalizing he tells us. The bad part of this is when it comes to his feeding therapies. Jackson has decided that he is in control and he wants it done his way. AKA - don't try to put something in my mouth, I will do it. His hand/eye coordination is so good now that he can snatch a spoon out of our hands in a heartbeat. He swipes our hands away, he pushes on our hands, anything he can do to be in control of that spoon. (More on feeds in a bit) This is frustrating at times because to better help him we need to be in control. We are working on teaching him "my turn" and "your turn". We do it our way a few times and then he gets to do it his way. We apply this to almost everything in his life these days!

Last but not least...the dreaded feeding conversation. After a boatload of therapists and money spent (all worth it) it has been determined that no one knows why Jackson won't swallow. It seems the functionality is there, he swallowed before the trach, after I combed through every detail of his life, activities, and even pictures post trach we determined he swallowed for a few days after the trach. Regardless when we brought him home he was not swallowing and had such an intense oral aversion that you could not even kiss him on the cheek without a total meltdown. Aversions are not pretty or fake. They are true fears developed inside of a person. It's your brains way of protecting yourself from what you think is painful or scary. This is the hardest part for me as his mom. Jackson was not born this way. Between the months of November - February things happened to him inside/around/near his mouth & face that were so traumatic that his brain believes it has to protect that area now. The first month that he was home he kept his arms bent up to his face, his hands wide open literally covering his lower face from us. Any attempt to move his hand or arm was torture for him. Fast forward to today and we can smother that whole face/lips with kisses. We can put lotion on his face, he mouths EVERYTHING he gets his hands on, he chews his fingers, and we are able to put tastes of foods (mainly yogurt) into his mouth. He moves them around with his tongue and eventually pushes it all back out but he loves it. He will put a spoon so far back into his mouth he gags himself sometimes! We work on cheek, lip, and tongue stretches when he allows. He isn't using his muscles for things like eating or talking so we have to keep them engaged as best as we can. The hope and prayer (that wakes me from a dead sleep at 3am some mornings) is that we just keep going until one day he realizes it's ok to swallow. It won't hurt him. We are realistic though and this accomplishment will be years in the making. Feeding is one of the toughest hurdles to overcome for a small one unfortunately.

That's that. Jackson is thriving at home and so are we. It is hard to always stay positive and see how grateful we should be. There are a lot of "why me" (even though it's not me in pain or working you know?) or "why us" or other pity party moments, I really do try to remember that I have more than so many parents in our situation have. I get to wake up and fight along side of him every morning and many did not have that outcome. In Jackson's short life we have been to the lowest depths and the highest of highs. Regardless I KNOW the dark days are beyond us and though the road is long, it is going to be full of heart bursting moments!!!

Surgery day!

Tuesday was a big day for the big man - back in the OR for an airway checkup, reflux testing, and an overnight stay at CHOP. The full force of the anxiety, nerves, and worry hit me when I opened my eyes Monday morning but I kept reminding myself that it could be worse, there are lots of parents who are dealing with much worse, and regardless of what they find it is not going to take away his huge smile and happy life...it didn't really work well though! Finally I went to the old stand-by "this isn't about you Melissa, Jackson is the one going through this and doing the work, you are only his cheerleader on the sideline".

I tried to keep my dramatics in check, we have done this 5 times before, but this time was different. He is my baby now, he lives in his home with me, he is a happy little boy who in my eyes is healthy and just fine. This time I was handing over my happy, healthy baby to a surgeon, not walking down to the OR with a team of NICU nurses and a very sick little boy. All of this experience brought back a lot of very bad feelings, even down to hearing the sounds of the monitors and alarms again.

Jackson knew none of this and was happy as a clam all morning even when they gave us the purple gown for him to wear. He pulled all of his usual hospital tricks, not allowing them to get his blood pressure, kicking too much for his monitors to work, smiling and luring all of the nurses in with his sweet self. He tolerated my squeezes and got lots of playtime with Elmo in his big bed. (He looks so big there right? But too tiny to be in that hospital bed!)
It was over in about 90 minutes and the surgeon was very pleased with the results. All 4 of Jackson's issues have either improved or stayed the same. He has less swelling, less irritation, no scar tissue or permananet damage was found. Dr. Javia stressed that more than anything else Jackson just needs time to grow and get stronger. He was so pleased to tell us that right now he thinks that Jackson has a chance to outgrow his airway problems and could avoid reconstructive surgery. We have a few things to work on at home but mainly our babe just needs time! We won't get the results on his reflux testing for a couple of weeks so will update on those at a later date.

Our little man had a hard struggle with recovery and we ended up spending a very long afternoon and night in ICU. When the rounds of morphine and respiratory supported started coming it felt as though we were back in the nightmare of months ago. By Wednesday afternoon he started to really perk up and we were able to get him back home! However we learned a lot of important lessons on what Jackson needs and how to best help him through these procedures. Life is back to normal now though and he is back to his happy loving self!

Thank you to everyone for your support, it means the world to know that so many people are pulling for him on days like that!