Friday, December 2, 2011
Happy 34 month birthday Abe. That night when we were on our way to Naval Hospital Bremerton shortly after midnight we had no idea that our son would be born. He is progressing so well especially since we moved in September. He says "hello" now and thinks everything from his hands, baby wipes to toys are phones. Kim, his respite provider thinks he also said "arm" when she put the arm on Mr. Potato Head. He may have said "John" to another kid at MOPS as well. Abe and I are both feeling better. He has a follow up visit with his primary care provider this month. We miss Dr. Gist but his new doctor is great too. He will be seeing endocrine next week at Children's to monitor his thyroid disorder. Also I am almost fully recovered from my surgery and so far no bladder infection issues. I still have to urinate frequently but it is nothing like it used to be. The transitions to the public school districts have began to take place too. He will start in February either in the predominately ambulatory classroom with his former Holly Ridge teacher Erin or in the medically fragile classroom. I am really torn because I don't want Abe to just sit in his wheelchair while the teacher and para chase after the other kids. I was told Abe probably would not have a one on one para educator if you was in the ambulatory classroom. I don't understand why he would not. It just seems like I have been fighting for his kid the minute the pediatrician at delivery told me he probably would not survive. The delivery nurse and OB doctor thought differently and he is thriving now. We absolutely love our new house. We still need to sell our Bremerton house since the mortgage and the fuel cost have become financial burdens. Glenn hired a contractor to do the work. This is also a financial burden but it needs to be done before placing the house on the market. All the carpet has been ripped out of the old house so the pet odor should be completely gone. The oak hardwood floor is being put in. Not sure if new carpet will be put in downstairs or if it will be the hard wood. The kitchen wall has been fixed and it looks great, just needs to be painted. We ask for prayer that our house sells quickly. We really need a generator for our new home since power outages are most likely to occur and the money from the sell would help us with that purchase. On a different subject at MOPS they had a panel of moms of special needs kids and they touched on some subjects that were very close to my heart. One mom also has a kid with hydrocephalus mentioned sleeping issues. This might explain why Abe never ever sleeps thru the night. He only would when he was tube fed all cozy in his wedge in his pack n play next to our bed but that was short lived. She mentioned that brain injury can interfere with the part of the brain that controls the sleep center. I wonder if this affects Abe as well. I have heard that sleeping issues are common for former preemies too. I have started thinking it was my parenting and that I 100% don't believe in the "cry it out" method for young kids. I feel it is appropriate for an older kid that knows better. I have asked some of his doctors but I they all said his sleep study was normal for a kid with brain injury. The sleep study looked for seizure activity and pulmonary issues. Abe was not found to have sleep apnea or seizures that one night that his sleep study was done. It was done 1 year ago about this time. I completely envy those that have 2 years that sleep all night. I function on very little sleep and have since he was born 34 months ago. I would love to give up caffeine but I feel it seems to help be focus and be alert so I can drive Abe to his therapies and medical appointments. I would like to wean myself off of it but I don't think I can do it cold turkey. If I got pregnant again I absolutely would since it decreases blood flow to the uterus. Another topic mentioned, "do friends walk away once you have a special needs kid". I must say some people have walked away. It is very heart breaking too. Could be God only intended them to be there for a short time. Maybe it is because my kid gets sick super easily and used to be hospitalized. He does not get hospitalized now but the common cold does knock him pretty hard. He loses weight, misses developmental preschool and ot, pt and st. Also he is not allowed to play with magnetic toys because it can reset the VP shunt. Magnetic toys are very common among other 2-3 year boys. Thomas the train, Mega doddle, ect. We are very thankful for the friends that have been right there with it through all the difficulties my family has faced since we moved back in 2009, so that they can celebrate our miracle boy that God brought into the world 34 months ago. My next post will probably be our Christmas letter. We still need to take a family photo too. Last year I was on the ball since Glenn was gone I used a June family picture.
Posted by Karen Goddard