Saturday, April 30, 2011
Wow Abe made it through the baby gate, down the drop off and made it all the way to the stairs. I caught him there playing with a piece of paper that he had just threw to the first step. He seemed so happy until I picked him up and moved him back to a safe place. This past week was difficult for us. The neighbor kept having parties that started at 2am, I had my MRI and I just wanted/needed sleep. She said sorry today and really seemed sincere. I had been praying for her thanks for advice from other people. So glad the MRI is over however I called to make an appointment for results and I was told June. Really 2 months to get results of something complex like an MRI. I did not get one just because. The doctor ordered it to further investigate why I have blood in my urine and protein and dilation of the urethra. I think they also looked at the shape of the uterus. This will determine if it is truly heart shaped. I think I want at least one more kid but am scared. Plus I see many moms with multiple kids and it appears to be more difficult than having one special needs kid. Abe got to ride a horse today with assistance and loved it. Also I helped him down the slide and he also enjoyed that. I am working on getting more speech therapy. Currently he gets 30 mins once a month and the neurodevelopmental ARNP wants weekly. I know a new speech therapist in the area that accepts Tricare. Now it is just a matter of getting the authorization changed to a private provider and out of Holly Ridge. Abe and I will be going to the zoo to celebrate Mother's Day and we are also doing the Duck Tour thanks to Starlight Foundation. The count down begins till Glenn comes home. It breaks my heart to hear Abe ask for "da, da, da, da" every time the phone rings. He thinks the other person is always da,da. We had a busy, busy week. He is sleeping and so should I.
Friday, April 22, 2011
On May 2nd Abe will be 27 months old. He has been asking for da, da all day today. He is starting to follow me if I go into the kitchen, if I take out the trash or if I get up from the bed. It is so cute that he follows me but also means more childproofing. We recently got a hand me down crib from one of his pals. He will sleep in for a few hours at time but then wakes up crying and banging his head. I just got a bumper pad last night and tonight will be our first time with that is place. My friend picked it for us at IKEA and she choose the colorful one. I hope this will provide visional simulation that is comforting. Some have expressed that the head banging is a behavioral thing, AKA temper tantrum. His PT who has worked with many kids with brain injury for many years said the head banging is for simulation. It is not fully understood but is very common with brain injury people. I also think it due to Abe's lack of communication. He is getting speech therapy 30 minutes once monthly. The neurodevelopmental ARNP at Childen's Hospital wants him to receive weekly speech therapy while his brain is still young and forming. I called PCM 2x this week and am waiting for a response back. Boy do we miss Dr. Gist but we understand her need to be home with her boys. I don't think the ARNP can put in the request for the referral to Tricare, it has to come from PCM. I know this add one more thing into our schedule however my family, especially Abe, take 1# priority, after God of course. He started the twice weekly developmental preschool class but so far I have not been able to leave since the staff is getting to him and his needs plus he gets over stimulated on occasion. The first day we had to leave the room and come back 30 minutes later. I recently purchased Abe a cheap plastic chair from Toys R Us and I allowed him to gently move out of it onto the floor. OT recommended this. I know a 5 year boy that is not able to walk that is able to do this. My hope is that Abe too will follow in his buddy Xander's footsteps. Recently I met a lady at Micheal's who has an amazing former preemie that is able to walk. He also has CP. I am looking forward to getting to know her better. We have had some changes in our respite providers due to family circumstances. We just hired 2 new providers. We have used one of the new providers already and she is so interactive with Abe and gets a kick out of his giggle. Abe and I went to a Mairner's Game thanks to Starlight Foundation. It was so sweet, Abe got a bag of gifts when we picked up the tickets. A wooden clock toy to teach time with moveable parts and blocks, board books, a ball and a scarf (probably for the momma). He also received his braille books from Seedling Braille Books. So cool they have bight pictures plus touchy freely stuff plus braille. If resources allow visionally impaired kids get 2 free books each year. On a more serious note my doctor has ordered a pelvic MRI to figure out why I have chronic blood and protein in my urine. I do have a kidney stone that is small enough to pass but the doc said it won't be without pain. (I have had one before and honestly gallbladder attack symptoms and pain is much, much worse). I also have a dilation of a gland in my urethra. I was put on daily oral antibiotic for 1 month. I was also advised to drink lemon in my water since this helps with kidney stones. The urologist was pretty neutral on advising on cranberry juice CranActin, or daily vitamin C. I am pretty nervous about MRI. I just want to be healthy. I just think my bladder infection in January was not treated properly and now I have chronic inflammation that the scope revealed this month. I ask for prayer that nothing major is found and for continued growth and development in Abe. I should proof this but I am too tired and we have a lot of Easter events this weekend. Thank you friends for inviting us. Christmas was a rough time for us. We felt very left out in social events but it was during cold and flu season so that might have been why. Very hard not to take it personally though.