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.

Tired and not sure what to do next

I am not sure if you all know of the battle that I have been fighting for Michael over the past 18 or so months for both mental and physical health care but it has been crazy and today I really feel defeated and it really is not going to hurt Michael if he does not get these therapies that I am fighting for but it would really HELP him for his future. I also feel as everyone close to me (except grandma) thinks I am over doing it and pushing to hard for him and that hurts even more. I really don't know what to think anymore and maybe I am just to deep in it to see what everyone else seems to see and think. This is what I found out today from his EARLY INTERVENTION REVIEW that was today:

1. He has a major speech delay
               Receptive Communication Age Equivalent: 7months
               Expressive Communication Age Equivalent: 11 months
But do to the fact that he has Kaiser Medi-cal they will not offer him speech therapy unless I get a denial Letter stating that Kaiser will not pay for speech therapy which Kaiser wont do because he is Medi-cal and it gets more complicated from there.

2. He should be in Occupational Therapy
                Fine Motor Skills Age Equivalent: 9months
                Adaptive/Self-Help Age Equivalent: 11months
                Cognitive skills:
                                          Attention and Memory Age Equivalent: 7months
                                          Perception and Concepts Age Equivalent: 11months
So again they will not give him O.T. because they need a denial letter for this as well.

Over the past 8 months I have read books and gone to classes to learn and understand how to best help Michael. I have learn some about speech therapy, some about O.T. and a lot about sensory integration and sensory seeking children.  I have been working with Michael daily for 45 minutes in the mornings and 45 minutes in the afternoon. He sees Stacie a FMTI once a week. She has been my best resource in all of this. Together we have learned the best ways to get through to Michael. He also sees his Early intervention therapist once a week. Because of all of this we have seen so much improvement in his langue and his ability to interact with people and children! But there is still a lot more and I don't know how or if I can help him go much further. To be honest I am scared because as far as discipline there is none. He really does not understand NO! He runs away from me more and more and since Tuesday running into the street!!! He can open all doors now so he can get in to anything or get out of the house! We have to move all the locks up high, he can open the frig, reach the stove and open the oven so now the Kitchen is off limits! The bathroom I wont even go there. I feel like nothing is safe for him. He eats/puts in his mouth all non food items but when it comes to feed all most nothing goes in! Our poor cats I am really supersized he has not hurt them yet! They are locked up almost all the time in our bedroom. But most of all I worry about how he is with Kaylee! He is so ruff and physical with her. He pulls her hair, crashes into her, and never gives her a moment to herself unless she locks herself in her room.
I am guessing that some of these behaviors are do to his langue delays but still what do I do? I just don't know anymore. Kaiser did evaluate him and gave him a diagnosis of autism spectrum disorder level 1 and I thought that would be all that I needed to get him help but it is not.
Are all the people who think I am over reacting right? Am I just to far into this to see that he is really okay? Maybe I am. He is not even 2 yet! He is at least getting some help and if I keep working with him maybe that is all that he needs. All that I know is I just can't fight anymore and that makes me feel like a really bad mother but I am burnt out and kinda out of options. If we could I would just pay out of pocket and screw all this insurance crap believe me I would! And you want to know the really sad part is that this is just for his mental health and you should hear all the stuff for his physical health! I don't understand why Michael is my child. I am waiting for God to show me the answer to that one.

A little bit of everything and some more. Most import is that Michael is FINALLY going to get all the help he needs.

Here is all that's being going on:

Life has been so crazy since my last post. The one thing I have realized it that the craziness is only going to get more crazy! LOL I helped with a week of VBS which was awesome. We did a joint VBS with Prince of Peace. It brought somethings to my attention that I had not notice and maybe wanted to see so now I am having a very hard time these days with church/faith. I really can't put a finger on it so I am also trying to work through that as well and leave it at that. I know that God is always with me even if I don't think so or want it to be so.

I had a few issues after my hysterectomy one being that I ended up with mastitis in my left breast which turned into a bigger issue than I had hoped it would. I had an ultrasound and then a biopsy and so on. Finally last week I was able to get everything taken care of and I am in a lot less pain. They have also have deiced to change my hormone therapy around as well so I have been kind of grumpy. I have also gone back to therapy once week. There has been so much stuff going on this past year and a half that I was starting to feel like I could not breath. At least I am starting to feel better.

Kaylee was sick as well with her first ever UTI as well as a Vitamin D deficiency. Kaylee does not drink milk of any type and only eats yogurt randomly these days. So she is now on Vitamin D drops. The poor kid. She has also had a hard time with school being out. She talks about it almost daily. She had VBS the last week of June and loved it. I can not wait for school to start in September for her. It will be at a new school but I know she will love it.

Michael was really sick again starting the end of June and beginning of July.  It started with both kids having pink eye and then turned into a massive infection for Michael. We did not really know that he was not feeling well until we noticed yellow puss like stuff draining from his ear:

The poor kid never acts like he is in pain. When we took him in the doctor could not believe how happy he was. So by the end of his appointment we left with 2 oral antibiotics, antibiotic ear drops and was told to keep him on Benadryl for the next 2 months. I still could not believe the smell that came out of his ear either. Yuck!

But the besting ever finally happened! Michael received a diagnosis finally from Kaiser. Michael had a 2 day evaluation done by a pediatric psychologist and a speech and O.T. therapist. This is something I have been hoping for! Not for a diagnosis per say but because there is a diagnosis he will receive treatment and therapy's that he was denied do to the fact he had no diagnosis. No more fighting with Kaiser! The Psychologist was very impressed that I had started getting him services through Kidango and Early Start so young but said because of that I have helped him more than they could have if I had waited! He will start Behavioral Health Treatment or ABA treatment as well as speech and occupational therapy! My goal as a mother is to help my children to be self-sufficient and happy and that is why I am fighting so hard for all of this for Michael. The sooner he receives the help the better. Yes he is young but there is no harm in extra help.

I have been worried about Grandma ever since her last stay in the hospital. I can tell it took a lot out of her physically. I know that her time is sooner rather than later but I still hate it! I try my best to help her but she still drives me crazy. I try not to loss my temper but sometimes I just can't take it. I know that she is worried about Lewis and I. I have told her over and over again that Lewis and I have each other and that's a lot but I still think she thinks we are just kids! I also think she is worried about Janet having to deal with everything. She really like her birthday gift I put together for her with the help of her family and friends. "93 reasons why you are loved and appreciated"! I catch her looking at it a lot. I just wish she could have one day of no worrying. I try to have my kids over to see her as much as possible because there is nothing better in the whole world than watching her with my kids.

The last thing that Ken and I are trying to figure out is MONEY! Ken and I are so happy with what we have: 2 great kids, a strong marriage, a great place to live, food to eat, 2 cars, and so much more than we need but still we can not pay our bills each month. I am unable to work outside the home do to child care issues and Michael's health. Otherwise I would have a job asap. I really do miss working out in the nursery. Ken has been applying everywhere but so far no luck. He is going to look into get a second job soon. I have a hard time making money more important than family but for now it is. I am sure that we will have to leave the area sooner that either of us wanted too. I wanted to stay for grandma and Ken wanted to stay for his parents but I am not sure if we are able to do that. This month we used the last of our savings. We have 16 more months to pay of my surgery and once that is done maybe we can start saving again. For now I guess we are going to be living paycheck to paycheck but at least we are happy and most importantly the kids are happy.