Doctors

Michael is sick yet again. I knew something was bugging him but not sure what and since we were living on vacation I just took him in to get check out. His pediatrician said everything looked good but wanted to take an x-ray of his stomach just to check to see if he was constipated. We took the x-ray at 4:20pm. Ken and I even argued about if we really needed to do it on the way there. Any ways we took the x-ray and headed to grandmas house not thinking anything. So at 5:20 my phone rang and it was his doctor asking if we were still at Kaiser! I said no we were at dinner and then she hesitated and asked how long it would take us to get to the ER. She explained that it looked like he has a complete blockage and needed to be seen asap. So ken and I headed to the ER and Kaylee stayed with Grandma. (yes I left my 4 year old with a 93 year) When we got to the er they took us straight back and admitted him right away. We saw 3 doctors and they gave him magnesium citrate right away. He hated that and screamed. The did a few more test and said that since he is not in extreme pain that he had either a blockage or an ileus.  They wanted to give him an enema and see if that would get things moving with the Mag. Cit-rate. Well we waited for over an hour nothing happened. So they sent us home and told us to come back first thing. We back that morning still no poop so he was given a second enema and told to come back at 2pm to talk with his doctor. Still no poop by 2pm so his doctor did a rectal and scoop some poop out in hopes of getting things moving. She told me to give him am enema again at 4pm and give him 2 a day on top of Milk of Magnisha 6 times a day. 

So fast forward a day and here we are. He has pooped a small amount 3 times since then mostly water but still he is moving stuff out. We had an x-ray again this morning to see where we are at with what is still in him. He is scheduled to have biopsies done in his intestines and stomach late next week. I am not sure what to think. Helpless is an understatement at this point. I feel like no one is listening to me. This poor kid is going to hate me from holding him down all the time.

it is times like these that I think someone else would be able to help him more than I am able to do. Someone with money who could take him to any doctor they wanted. Money is always the problem. I am really hoping that this new GI doctor will help us. It is our 4th one at Kaiser and the last one at Santa Clara Kaiser after that we have to go to San Francisco Kaiser. Fingers crossed this guy will listen to me.

 

Busy month and getting ready to go on a vacation.

This month is flying bye! So much has been going on with the kids the month is more than half over. I had so many plans for this month since I was only going to be watching Payton one day a week but have only gotten a few things marked off my list. Michael is taking up a lot of my time during the day. He is now afraid of any flying bugs! I mean he is terrified of them. he screams, shakes and even throws up! Just one more thing to deal with. LOL

Last week I had to do some routine monthly blood work and my doctor was not happy with a few things so I had to go in and have an MRI done last Thursday night. She called me yesterday morning and I am going back on some antibiotics and one other medication that is new. Now I know why I am still tired all the time. I really think my body wants hates me! I don't understand why I can not just feel better an get my energy back to normal!! My goal is to feel a lot better by October for our trip.

Kaylee is so happy about going to Disneyland. We are marking days off on her calendar! She is happy. She has been even putting close aside to wear at Disneyland and asked us to help her make a list of people she wants to meet (Disney characters and princesses). It is up to 12 right now! I am so happy that she is looking forward to this. She has put up with a lot since Michael was born and I am glad that we can do something special for her. We paid for the hotel along time ago and my MIL paid for Kaylee's and my ticket to get into the park so now we just need to buy one for Ken and we are set.

I forgot to mention that it looks like Ken got the time off from Costco and CVS so he gets to come along! Now we just have to decide what to do with Michael. We have it set up to leave him behind and have several people helping take care of him. But I am still worried. I worry because either Ken or I have been with him always. I worry because I am really the only person that understands him and for him to be frustrated for 3 days. I really just don't know what to do with him. Disneyland will be overload for him. Ken thinks he will be fine staying behind but still I am unsure of what to do. Grandma has said that everyone can watch Michael at her house as long as someone is with her she is happy to have him there. That makes me feel a little better I guess. I also know that we all will have a much nicer time if we leave him. Ugh I guess I am still going to pray on this and figure out what is best for everyone.

Saying Goodbye to Stacie

Today was a very hard day for me. We had to say goodbye to Michael's therapist from Kidango Stacie. She was the first person who started working with Michael back in October 2015. She helped me and Michael through one of the hardest times in both of our lives. I can not even begin to name the resources and supports she told me about. She went with me to see Michael's pediatrician and several other appointments, she helped fill out endless paperwork and ALWAYS told me I was doing the right thing for Michael and fighting a battle worth fighting for. She helped me appeal for speech therapy when they denied it and was with us when they finally agreed on a diagnosis! She also taught me a lot about Sensory Possessing Disorder and how ti help Michael self regulate. 

She was at our house every week for 2 hours for almost one year. So much good has happened for Michael because of her. But after Michael revived the A.S.D diagnosis she could no longer provide services for him because they assign you to A.B.A therapy.  So our time has now come to an end. I am not sure if Michael will notice and even if he did I am not sure that he would be able to ask / or even tell me. I think that part is the hardest part for me. She was the most important person in getting him all the help that he needed and now has and he wont remember her. But he will have a much better future because of her! That is the most important thing of all. Good byes are always hard and I am sure this is the first of many that are to come for us. 

For now I am truly thankful for her and all that she has done for Michael and our family.