First I want to apologize for not updating in a million years. I was sharing allot and then I received some not so nice messages saying all I do is complain so I got a little bummed. Not anymore I’m back and going to share in hopes it will help other moms feel it is ok to share their good and bad days we are living them.
We went to strykers feeding clinic he gained .8of an oz yeah b better than nothing wow big surprise we need a swallow study and she says strykers tonsils are pushing past the point of being ok they have gotten bigger in the last two weeks she suspects we will be having surgery within a few weeks. She suspects aspiration being the cause of his crazy fevers she said he could be getting a touch of aspiritive pneumonia and then his body fights it so we have never caught it. we are changing our feeding patterns and i told her ahead of time and the nutritionist I have no problem with getting fat into my son but I refuse to just add junk to his diet like ice cream and whip cream in his fruits i dont feel that is teaching him a positive way to eat in his future we are going to cut back to three pediasures from four.
Then the dr told me i was the most efficient mom she has seen in over two months with keeping his meals and snacks balanced, pacing him and the time in between that felt good. but I was sad that other parents don’t care or don’t have the time to go the extra mile to make sure there kids nutrition is the best. She also said I should change my major to speech and occupational therapy she would love to see people like me working with parents I think my plate is a little full but I did tell her as part of my masters I would love to do an internship. So on the medical front the fevers may be caused by aspirations we will be doing a swallow study. This also could be the cause of his chronic bronchitis. We will be doing a sleep study Friday. Hopefully a follow up mri of his brain soon. That way we have a base line. We will be doing surgery in the next month for tonsils and adenoids as they are way too big and causing swallowing and breathing difficulties .Besides this entire he is a happy little guy he started a new school he loves and is doing great. He is regaining his speech and vocabulary is growing daily which he lost when his brain herniated.
So today I was talking to my four year old niece we are raising and we were talking about rainbows we love them and her uncle my husband lets her take the hose and make rainbows when the sun is out she was telling me how wonderful it is and how God made the rainbows so pretty and perfect. so I asked do you think if the rainbow was missing a color it would be the same she said no it needs all the colors. So then I was thinking about the families dealing with their kids being different and how we are all different and unique. So my niece makiah and I talked about how like the colors of the rainbow are all different lengths sizes and colors so are people but we are all special and unique God made us all different because that’s how he wanted to see the world be a beautiful place. Then we talked about kids with cp down syndrome ect we talked about stryker and his chiari she calls it his broken brain and I told her we might want to just call it a brain owie because his brain isnt broken but it does hurt him. We know a little boy who has down syndrome and she said it would be sad if God didnt give jaxs to his mom and dad he is so happy and always smiling Im glad God gave us all differences cause it does make us happier. It would be boring it we were the same. It was neat to help her see at four that without all the colors in the rainbow just like without all our differences we wouldn't have beautiful rainbows or a colorful world. Then she went inside and told stryker you’re a special piece of Gods rainbow in this world with your brain owie cause I don’t have a brain owie so we are all special and make life happy.
I pray you all have a blessed week.
