Michael update

Being a mom is the best thing ever! It is also the hardest thing I have ever done and now with Michael way out of my comfort zone and understanding. Before I had kids I always thought I knew what it would be like and thought I prepared myself for what was to come. I was so not ready for everything that Michael has thrown at us. I still feel very blessed every day to be at home with both of my kids and be the primary person raising them. We have had to make a lot of sacrifices to make that happen but both Ken and I think that it is important for our kids and even more important now that Michael will need a lot more help in his early years than most kids. So all in all it is worth it to be with the kids all the time. 

With all this stuff happening with Michael over the past 2 years I have felt very alone during most of it because almost everyone thought I was pushing to hard to get him help. Then with all his health problems it is overwhelming to me to even think about. I have had to make some very hard decisions for the past 2 years and there are many more to come. 
1. His pediatrician wants to do biopsies of his tummy and intestines to check on a few things but his new GI doctor is blaming all his GI issues on his A.S.D diagnosis (which I have never heard of until he told me)! So I started doing research and now I am not sure who to listen too! I really don't like his GI doctor and really trust his pediatrician but she has not worked with a lot of A.S.D kids. So that is one thing I have to decide on. 
2. His new GI doctor wants me to put him back on all dairy products because he thinks Michael has out grown his protein intolerance. So we tried it Friday and Saturday and the poor kid has had a tummy ache and gas and diarrhea like crazy. Today was the first day he has had no runny poop. So now he wants us to try lactate milk products! 
3. Then a week from Friday he has his O.T. evaluation from Kaiser. It takes about 2 hours and I know that they will denial him which is fine but the San Andreas Regional Center wont provide O.T. for him until they get the denial letter from Kaiser and then after that they will do their own evaluation as well. I hate having him to though all this it wheres him out so fast. 
4. Michael has a very limited diet and I have many people telling me what to do because at 2 years old there is a very good chance they will not continue to cover his formula. I should mention that one can cost 42.00 and he goes through a can every 3 or 4 days! so that is 2 cans a week and 8 cans a month which is more than we can afford. So I am freaking out about that and trying to find stuff he will eat that will make up for the calories and nutrition in his formula. I am taking a class at Parents Helping Parents (a nonprofit for families that help kids with special needs) for S.P.D and eating issues next week on Thursday and I am hoping I will learn a few things. 
5. ABA therapy has started and it is going to take him and the family a long time to adjust to this. Right now we are starting at 15 hours a week but they want to increase it to 25 hours a week in about 2 weeks. I don't think that he will be able to handle that much so I have a meeting scheduled in  Monday the 24th so we will see.

But there have been a few good things in the past few weeks he has been calling me mommy and it is the best thing ever. He knows who I am and that I have a name! It is so good to see him make the connection finally. He now knows 6 body parts: eyes, ears, noise, tummy, feet, and fingers. He can't say them but he knows where they are! We are working on animals now and he seems to really like the noises they make. He is fixated on horses though so I may have to get a few plastic/rubber ones for him to play with. He can moo, baa, neigh, bow wow, and  kinda quack. again I never thought this was going to happen but he is finally getting it.We are slowly starting to use P.E.C. (picture exchange communication) he still does not understand it but I am hoping it will come to him soon. 

Disneyland

So we did it! We took both kids to Disneyland and best of all Kaylee had the time of her life! The drive up took a lot longer than we had planned. Poor little Kaylee got super car sick. It started about 2 hours into our drive and just continued from there. She is now a pro at throwing up in a zip-lock bag though. We stopped to get Dramamine or Benadryl but as most of you know Kaylee is not the normal weight/size of a 4 year old so the pharmacist I talked to suggested that we talk with her pediatrician before giving her anything. Which was a good thing because it turned out she is only suppose to take a 1/3 of a dose. But after it kicked in she was finally stopped throwing up!We made several stops along the way just to give her breaks. One place we stopped was Kettlmen City and they have the best park for the kids to play in.

We ended up checking into our hotel around 6:30pm (3 hours later than we had planned for). Kaylee wanted Jack in the Box for Dinner which was right across the street and then both kids were in bed by 8:30pm! The next morning was so exciting Just to see how happy Kaylee was.

 We got to Disneyland just after they opened and it was not crowed yet. Kaylee was over the moon!! She thinks everything is magical! It was so amazing to watch her run around like crazy and plan our day there!

 Michael on the other hand was not happy about any of it. I am not sure what was getting to him but he was not happy at all 30 seconds after we walk into the park and he never stopped until after we were back home. For me personally that was disappointing because I then had to handle him for most of the trip which meant that I missed out on a lot of stuff that Kaylee did. He did do a lot better if i had him in the carrier but the kid is close to 30lbs. and with all the walking we did he got heavy fast! But we were there for her and all that mattered was she had fun.

Mickey mouse! She asked him if she could tickle his ears!! Michael was so so scared he was shaking.

Princess Kaylee

We finally got the kids these bubble wands and that was the best thing ever for Michael and really helped him calm down. The only down side is they also play music from The Little Mermaid!

Even with Michael having a hard time is was the best trip ever because of Kaylee. The 1st day we were there she said Thank you mommy and daddy over 50 times and she never complained once about a thing even Michael being a pill. I hope she remembers this for a long time. She had already started saving her money for our next trip back. My special silly girl. I hope that she never changes and that she always sees the best/magical in everything and everyone always. I have so much to learn from her.

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. 

Kaylee's Birthday and all my mommy fails!

Ugg. today did not go as planned at all. I always try and make the kids birthdays meaningful and special just for them and not just giving them gifts but nothing went as planed for Kaylee today. See my parents mostly my mom did not do the birthday thing for me and made them kinda crappy for me. So I want my kids have one special day just for them where they know that I/We are happy that they are here and celebrate that with them. So when things did not turn out as I had planned I got a little down. Money is really tight and I had to keep things simple but she got to pick the things so we planned stuff last week.

Here is what I/We had Planned for:
1. Birthday Pancakes for Breakfast: Homemade with sprinkles and chocolate chips.
2. Pick up Payton and go to the park of Kaylee's choosing
3. Make a birthday cake and special cookies for her to take to school
4. Sign her up for Gymnastics Class at the willow glen community center
5. Have dinner at McDonald's and after dinner play in the in door play area
6. Watch one show before bed.

Here is what really happened:
1. No time for breakfast do to Michael so she had chocolate milk in the car on the way to pick up Payton.
2. We got to the park and started to play for about 10 minutes until Kaylee peed her pants ( to busy to stop playing to go to the bathroom) so we had to leave and go home.
3. We were unable to make the cake or the cookies because I did not have all the ingredients (mommy fail) so we went to the store and got Oreo's to take to class. No birthday cake at all!
4. There are no more scholarships left for this year at all of the community centers so she is on the waiting list (number 22 so not likely) she cried about this one! second mommy fail.
5. Do to scheduling issues I did not realize that I had Payton longer today so we ended up having dinner at Grandmas house. She cried about this too. third mommy fail
6. We did watch one show before bed and mommy even let her watch two!

I am happy to say that Kaylee was happy with her special day even if I was not. She was thrilled that we have a new kids CD in the car to sing along with and that after dinner at grandmas she got to play with uncle Lewis. This girl is teaching me so much I can't keep up! I love her so much it is crazy.

Job's and trying to make life work out for the best!

Well first off there is no such thing as a part time job anymore. They say part-time but all that really means is they want you to work 40 hours a week and have open availability and not have to give you benefits! I am so frustrated all the places that I put in applications for called me and offered me jobs but with way to many hours required and really not that much money compared to what I was making at Orchard Supply when I left. The hard part is working around Ken's crazy work schedule at CVS! I can only work early morning's or late nights and if I do that and then have the kids until bedtime at 8:00 pm I am never going to sleep! To be honest I am completely scared and I am not sure how I am going to handle it. I also just found out that Michael's ABA therapy is for 15-20 hours a WEEK on top of the Early start! I just wish I could find a solution to everything but for now I have to just take it hour by hour and day by day. I am still hopeful that Ken may find something as well.

Michael is getting harder to handle and I am tired of dealing with him. I know that he does not understand my reaction to things because he always thinks things are funny. I finally broke down today and bought a back/lease for him. He keeps running into the street on me and is so strong and fast he gets away. He got away from me this morning when we were getting into the car and ran straight for the street! Scared me really bad this time.

This past Friday I also got my first comment about how I am parenting him incorrectly and I need to set better/clear boundaries for him! He is a NORMAL child and I am just making excuses for him. I took my kids home and I cried all the way. To be honest I don't know anymore. I am happy to change anything I am doing to make things safe and healthy for Michael and Kaylee. I am also happy to admit that what Ken and I are doing parenting/discipline wise is not working for Michael and I am out of idea's so please if you think you can deal with him day in and day out please feel free to try. He has been working with a therapist for almost a year now to help him and us to fine a way to stay safe and nothing has worked that's way he is finally getting the ABA therapy because the normal stuff was not working! **sorry about the rant I guess I am still a little mad**

The best news is that I found out on Friday that Kaylee got in to preschool 5 days a week 3.5 hours a day. She can't wait for it to start! I am so happy that she will have her own thing everyday and a break from Michael. I really hope she stays this exited about it all year but we will see. I am just happy that she is so happy. Kaylee's birthday is coming up and we are going to have a BBQ at a park near grandmas. Simple easy and just what Kaylee wants. It will be Rainbow themed. Lots of bright colors is what she asked for and water balloons! The kid is easy to please. I am going to try and make a Rainbow Cake wish me luck.

http://www.bettycrocker.com/recipes/rainbow-layer-cake/4969fed8-141e-45f5-9a04-e03addd20fbb

I know she won't care what it looks like so that's good. I have lots of ideas for simple games and so on. I want to make it a special day just for her.

Last but not least my doctor wants me to find time for me to take care of me. She is worried that I keep putting myself last I won't be able to keep up with everything that happens on a daily bases. I think it's funny I can't even find someone to watch both kids so I can go to my doctors appointments but she thinks I can fine time for me to take sometime for myself! FUNNY my dad always said that "I will sleep when I am dead" and now my brother says that all the time and I am too. My one true goal for my life is to help my children grow in to happy healthy adults and live long enough to see it happen. I am 34 years and if I die at the age my parents did I have already lived over half my life which is really not that much looking at it that way. I hope that I can somehow live as long as grandma has. 92+ years is a lot longer than 66&67 years! I am tried the tiredest I have ever been but I am also happy with all that I have and how blessed that I have 2 wonderful children (which I never thought possible) and a husband how is my best friend! The happiness (and yes the kids) are why I get up every morning and why I try not to complain about how bad I am feeling is because what I have right now is really all I ever wanted or dreamed about. I know I am lucky and will always remember that.