I just gave Hawk his night time shot of blood thinner. As much as I hate giving him shots, I sit here and watch him play with his toys and I can't help but remember times that were soooo much worse. The extreme times when they put him into a coma to attempt to control his seizures, when they put a rubber band around his head to try to place an IV after many failed attempts in his arms, when they used a wire to try to catheterize him after 2 bloody failed attempts while he screamed, when he laid in the PICU with tubes coming out of his head draining infected fluid from his brain into bags beside his bed... ugh, it breaks my heart. And as I type this, I realize satan has me right where he wants me, in the past! I was trying to say how grateful I am to God for having a shot be the worst thing Hawk has to feel. Anyway, maybe I should just move onto the update from yesterday and today.
Last night we went to spend time with our friends, the Purcell's. They have two kids, one of which is a little sweet girl just a few months younger than Hawk. We laid them side by side and they were sooo cute. That is the picture posted here. Aren't they the most precious things together?
Hawk went to the chiropractor this morning and then to the first session with our new OT that specializes in infant feeding. He ate some baby food, home made by his "Aunt" Katie Purcell and did well with that. Then tried the bottle but fell asleep for his morning nap while trying to eat. The therapist suggested trying a short straw with him so we will see how that goes tomorrow. Then we went to visit our friends at the inpatient rehab unit at Scottish Rite. They are so great and we love to see them. They were all surprised to see how big Hawk is, how much hair he has, how great his eyes look, how much he is moving, etc! It was so nice to hear comments like that from people who have not seen him in a while. And they are going to write an appeal letter to insurance for more therapy visits. We then went to our neurosurgery follow up appointment. Dr. Chern and his nurse practitioner, Corie were so pleased with Hawk's CT scan results. They said we won't need another image till 6 months from now and it will be an MRI. They said his head size not growing is ok for now, his sutures are not fusing together but are still overlapping, the low pressure shunt is fine, all the ventricles are smaller, his brain is relaxed and filling in, it has some folds now which is where intelligence comes from, and now till 18 months of life is when your brain grows the fastest so we are giving him the best chance to grow brain! They suggested an appointment with the orthopedics office to see about a helmet to help Hawk's flat spot on the back of his head. So we then went to that office across the street. They did a scan of Hawk's head (not a CT, just like a 3D picture) that measured circumference and proportions. His head size, 43.5cm is very small for his age, which we knew. His head is very symmetrical but is about the same length as it is wide. It should be more of an oval than a circle. The helmet will most likely not be covered by insurance and is very expensive but like I told John, "I can't imagine telling my teenager, sorry he has a flat head because I was not willing to spend the money"! No way is that an option. Oh, and the neurosurgeon and the orthopedic people are going to to write letters to the insurance appeal people also, for nursing and therapy.
Then we got stuck in ATL in rush hour so we ate supper out there. Wow, long day but it was a good one. Hawk just went to sleep in Granma's arms Now Mama and I are watching our recorded Big Brother from last night, can't wait to see who gets voted off!