Post 13

I do realize Gabriel needs interaction with other children. I also realize he needs to be able to see other children walking and eating. I believe this will spark a curiosity and hopefully spawn his own desire to walk and eat too. I realize he needs kiddos his own age to interact with, he needs silliness and laughter. He needs to know that he can be without mommy for awhile, and that mommy will always come back. It will be a good thing when he can go back to his program, but I have no idea when that will be. It all depends on his health and, of course, the approval from his many many doctors.

In the mean time, since I feel energized and inspired, I figured this would be as good of time as any to introduce Gabriel to the potty! Potty... I used to roll my eyes when my mom would use that word, and now look at me. I’m happy to scream the word potty in a crowded mall in front of a hundred people because baby, it’s potty time!

True, Gabriel can’t walk yet, but after thinking about it I realized something. There are children who are wheelchair-bound and have many physical issues that learn to use the potty every day, so why not Gabriel? My sister-in-law donated a potty-chair she had used for her little ones. I now have the tiny potty in my home, awaiting a tiny little butt to warm its rims.

For now, I’m simply letting Gabriel get use to its presence. He sits next to it, sometimes he will lay on the floor and put his legs up on the seat. He is still reluctant to sit on it but that’s ok, one day at a time. Every few hours I change his diaper next to the little throne and say, “it’s potty time!" I want him to associate the potty with the disposal of his diaper, I even put his wet diapers in the potty to show where it should end up. This may be a long road, but I’ll keep you posted.

In the mean time since he can’t speak yet, I've been teaching him sign language. Because the bone structure of his hands are very different
it is hard for him to replicate the signs I teach him, but what I have found is that he creates his own similar signs. He has learned that when he has a full diaper he pats his diaper with a closed fist. When he is hungry he sticks his fingers in his mouth, he knows how to shake his head no and nod his head yes and shrug his shoulders when he want’s to say “I don’t know mom”. I've realized when he threw a tantrum it was out of frustration because he had no way to express what he needed. But now that we have the basic communication covered, I've noticed he's much happier these days.

Anyway that’s my tip… encourage your children to sign and please drop me any tips on this potty stuff!

Post 12

I got to thinking… I have now been a single parent for two years now. Single an unable  to make any money due to the extreme circumstances. Only God knows how hard I've tried to change these circumstances. For two years I have woken up every day with one mission in mind: to fix our lives and get my son healthy, into a great daycare, assure he does well, then get my butt back to work. Every day I have a constant drive to earn money again and stand on my own two feet the way I had done before. I have sought every avenue, wrote countless letters, interviewed countless caregivers, and each time ended up at a dead end. 
Once anyone fully understood the extensive care my child required they would run for the hills. 
Then Gabriel was accepted into a special early childhood program for a few hours each day and it looked like I'd be able to get back to work, but shortly after he started the program, he was hospitalized again at the end of October for a virus.  Then three weeks later he went in for a MRI and ended up staying in the hospital for 16 days!   He has now been back home with me, out of the hospital for a month and still unable to return to his program and friends.  
It has been in this time   I've realized how much I miss him when he is away, and how glorious it is to have this time together.
After two years of trying so hard to “fix things” I finally learned something. I learned that everything is as it should be. I realized how precious each moment is, even on days that drain me, days where I swear I’m brain dead. I realize it all boils down to my attitude about life. The situation didn't need changing.  My attitude needed changing.
It’s time I make peace with our lives and appreciate the good things we have. I have my parents, they have taken us in and adapted to the circumstances, and I have my brother and his family who give me tremendous support. I have the ability to be with my darling nieces more often. I have the gift of growing as a person, the gift of having lived on both ends of the spectrum. I once was a care free, worry free, shoe shopping money making, fast car driving, selfish, closed minded clueless, empty girl. But through this difficult time I have become closer to the true definition of a mother: caring    loyal, appreciative, humble, grateful, strong, passionate, frugal and loving.  
I love being the mom of Gabriel. That is something all the money in the world can’t buy. That is something you can’t just learn by observing or reading about it, that is something you have to actually live and breathe.
So with this epiphany, I have felt a feeling I haven’t felt in those two years, the feeling of contentment and along with contentment comes relief and with relief comes peace.  
When I reflect on the past two years I’m amazed at how far my Gabriel has come. There was a time when we didn't think he would ever hold his head up and now he scoots around on his tiny little butt as though he is on a mission of his own. He inspires me, he is the only one that matters, he doesn't care if mommy has her own house, or job, or if mommy can buy him nice things. 
All he needs is his mommy and all I need is him.

Post 11

A few months ago I noticed he has growths of skin at the base of his spine near his bottom. I have read about this before in Costello children. They look like skin tags. The skin tags indicate possible channels growing into the spinal cord. This could explain why he has been unable to walk all this time.

Gabriel went in for a MRI to determine if he had a tethered spinal cord. He ran a low fever the prior night but had no fever the morning of the test, so they proceeded. When putting him to sleep they intubated him. There were complications that resulted in his going to ICU on oxygen for 12 days, followed by an additional 5 days with oxygen on the Pulmonology floor.  Four days into his stay he tested positive for a rhinovirus, so they presume that was the cause for the complications. Eventually Gabriel was sent home with oxygen tanks but thankfully we haven’t had to use them yet. A few weeks after being home Gabriel went for another chest X-ray and they discovered he had pneumonia. I decided it would be best to keep Gabriel home from school for the next few months. He needs to make a full recovery and then some. I have put my classes on hold and will return to school my self once we are over this hump. The good news is while Gabriel was in the hospital, we received the news that the MRI on his spinal cord was all clear. Gabriel does not have a tethered spinal cord. 

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blog 10

So now I’m all caught up…. Gabriel started a school program designed to give people like me (a single mom) a chance to go back to work or school.  

It was a long and involved process to get him in, especially with his severe condition. I’ve been working the past year to make this happen for him. The school needed permission from Gabriel’s doctors before he could attend this program. I’ve had to obtain sevrel letters stating that he was stable enough to attend this program. We needed to get duplicated meds to keep at school, etc.  

The school told me they had one nurse for hundreds of students and with his complicated feed schedule it was impossible for her to set up the pump, clean it, wait for the feed to be over then come back and clean the tubing. Instead they would request additional funding
 from the school board for a extra nurse, just for Gabriel. If they were successful we would not have to  take him off the pump during the day. Unfortunately this route proved unsuccessful. In the end, the only way to get him into school would be if he was off the feeding pump during the
 day. I waited many months but under the guidance of his GI doctor, I slowly weaned Gabriel off the pump. 

We weaned him from the pump to the bolus tube over the course of many many months. On the pump, his feed took about an hour but a bolus feed takes about five minutes.  I now could bolus him during the day and he would only be hooked to the pump throughout the night. 

After all these months, he could now go to school. He deserves a better life. For the past year the two of us have basically been confined to one room all day, hooked to his pump… I stayed by his side and read to him sang to him, used flash cards, we played, you name it. Our daily schedule was filled with appointments with any of his 12 doctors, so we rarely got to do anything else! This opportunity would expand his world.  

Gabriel finally started school in Oct of 2012, we had to ease him into this new world. 
Every week I took him to school and stayed with him for a few hours. Then we would go home. He’s made many friends while at school, Gabriel also gets therapy from an early childhood group for children with disabilities. Gabriel is thriving and I finally have time to work on changing our lives for the better.