Kaleb's getting Speech, Occupational, and Physical Therapies through Therapy 2000, and he loves his therapists....most of the time anyway. It's amazing how much he's improved in all areas since we really focused on regular in-home therapy around the end of August. Speech Therapy is mostly feeding therapy for him, and he's WAY behind in this area. He is still entirely tube-fed, and right now he's still being fed continuously. The good news is it's now a G-tube instead of the NG, and the difference is unbelievable! No more gagging randomly that leads to vomiting or yanking out the tube several times a day. Also, in another month we'll return to Dr. Megison's office and he'll convert it to a G button...that will be even better. (we hear) We're working with our fabulous therapist, Chessa, to get him interested in food, and he's finally getting Vitalstim! Vitalstim is definitely a subject for another post, because I could go on and on about what it is, how long I've been lobbying for it for Kaleb, and how effective it was for Kaleb's cousin Noah...if you know our family history, you know Kaleb's cousin Noah had a stroke in utero and had major feeding issues in the beginning as well. Vitalstim was a HUGE part of his recovery and eventual ability to eat just about anything he wants as a healthy happy 2 1/2 year old. But like I said, a story for another time. We've been working in Occupational Therapy with our wonderful therapist, Haley, on fine motor skills. Believe it or not, he's better at these activities than anything else. We work on hitting things together, putting objects into other things/taking them out, stacking, etc. He's made amazing progress in this area. Our Physical Therapist, Amanda, is awesome, but we are pretty behind here too. We are really focusing on encouraging Kaleb to crawl...right now he is a champion bottom-scooter. He has made amazing progress here, but we have a long way to go before we're cruisin' the Prinz casa....which is probably a good thing since "Operation Get Our House Baby-Proofed" hasn't exactly happened yet. Soon, we keep saying, soon enough.
Kaleb had a Cardiology appointment last week, and Dr. Nugent is thrilled with how well he's doing from a Cardiac standpoint. He scheduled Kaleb for a Cath November 6th to make sure all the surgical repairs still look good, but after that we've been told to expect a couple of YEARS before his next major procedure. Did I just say YEARS?! Yes, I did. We finally made it to part I couldn't imagine. I'm so in awe of the idea of a regular life with Kaleb, I don't even know what to say...except that I'm extraordinarily grateful and blessed!
You've probably noticed in his recent pictures...especially if we're Facebook friends...Kaleb has a helmet now. All that time spent on his back and the terrible reflux that prevented tummy time created quite a case of brachycephaly/plagiocephaly and so a helmeting we will go! He's done amazingly well adjusting to wearing it 23 out of 24 hours of the day, considering he absolutely hated hats before this. Hopefully, treatment will be finished by Christmas. Until then, he'll be rockin' the helmet so hard every kid will want one! ;)
The strangest thing we've started since returning home from his heart surgery is in-home nursing care. We finally qualified for a "Medically Dependent Children's" program that provides respite care for parents of critically ill children, and the idea of it is amazing. The reality of it has been really hard. For Kaleb's entire life, he's had mommy, daddy, and Mimi most days, and not a lot of interaction with other people. Home is his safe place, and now Tuesday/Wednesday/Thursday during the days and Monday/Thursday at night two virtual strangers come to help take care of him. The days have been the biggest adjustment for both of us. We have gotten used to our routine, and let's be honest....we like it! Now we have this really nice lady with us all day 3 days a week. I can't even believe I'm considering complaining because we've needed help for so long, but it's a bit much at the moment. A huge part of the problem is Kaleb is terrified when he can't see me. Any time I leave his line of sight, at any point of the day(even to use the restroom for 1 minute) he starts screaming and won't stop until I return and pick him up. Some days he cries when I'm not holding him....all day. It's not exactly what I had in mind for respite care, but I can understand why he's not comfortable. He's spent an incredible amount of time in the hospital, and he's learned who he can trust...and then there's everybody else. I keep telling myself it's just going to take a while to adjust, but it's been almost 3 weeks with very little change. Until then, I nap on the floor next to him, and she takes him for a walk a couple of times a day so I can shower and get a little break. The nights are easier because he very rarely wakes up anymore. I sleep well knowing that his feedings and diaper changes are taken care of, wake up once to pump, and hope he keeps sleeping. ;) Hopefully the next time I update the blog, this will be much better!
Coming up, a trip to the Arboretum for pumpkin pictures, a day at the Flower Mound Pumpkin Patch, picking our pumpkins with mommy and daddy, and Halloween. So much October fun to be had, we can't wait! God is great....life is really good.
One day, one hour, one minute at a time,
Jenifer
Lunch with daddy at his office
Play date with Landry and Makenzie-I promise he started with pants!
Shopping with Mama and Nurse Patricia-he loves straws!
Driving his car in the nice weather!
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