A few random updates

These last few months have flown by. So much has been happening for all of us. So here is a run down on all that has been going on since October. Michael is 2 now! Plus Christmas in 19 days!

This is an amazing photo and I am so happy that we took it. Grandma has been a life saver these last few month for the whole family. I never imagined how much joy and love I would feel with her being in my kids lives. My heart truly overflows every time I see them together. I don't know how grandma has done it. With all that has happened throughout her life time she keeps going.

Ken is now a FULL-TIME employee at Costco with a SET SCHEDULE but has routing days off. He had his 90 day review and they are very happy with everything he has been doing. These last 3 months have been really hard on us with him working between 60 and 80 hours a week but it has been worth it! In January Ken is either going to quit CVS all together or transfer back to Foxworthy and only work 2 days a week. We are waiting to see if they will approve the transfer. All in all Ken is so happy with Costco his mood has improved so much and he feels like he is part of a team. He took an almost $5 pay cut though. So money is going to be really tight if he leaves CVS all together so please pray with us that they will okay his transfer.

We had our 1st review with Kaylee's teacher as well and learned that Kaylee is doing great with her school work and is the very very active and social. The only thing they are really working on is sitting calmly during circle time! LOL that is never going to happen. She goes M-F from noon to 3:30pm. The best part is Kaylee wants to go to school everyday. A month back she was sick and cried and cried when i would not let her go for 2 days. She is also finally out of 24 month clothes and can wear all 2t pants and 2t or 3t shirts! I am glad that she is growing. Kaylee also loves christmas. She decorated our tree, her room and Michael's room. We are doing the new advent calendar this year acts of kindness. Each day we do a kind thing for someone. She is amazing. I don't know how much she understands but her heart is amazing. The other day we were leaving a store and there was a man (i assume he was homeless) in a wheelchair asking for help. She asked about him. She thought for a minute and asked if we could give him some of out stuff. So she gave him a bag of goldfish and some capri-sun drinks. But the best part was she went and talk to him as if she had known him forever and wished him a Merry Christmas as we walked away. I hope that she never losses that. In her mind everyone deserves kindness no matter what.

Michael has been making great strides in talking these last few months! He has more and more words but the best part is that he sings songs all the time! His new favorite is Rain Rain go away..... He is going to finally start OT in January. I have been trying to figure that out for almost a year now. He is currently on antibiotics yet again for an infection and we are planning to have more tubes, his adenoids remove and biopsies all done at the same time in January. But slowly we are starting to see changes. ABA has been hard on all of us not just Michael. ABA is very day from 9 to noon and the 2 times a week in the afternoons 2.5 hours for a total of 20 hours a week, he has speech 2x a week and early intervention therapy 1x a week. The if you through in his doctors appointments and feeding therapies I spend a lot of time just dealing with him. But it has been so worth it. He has been making so much progress and I am learning how to parent him differently which makes us both more happy. He still gets in his moods and sometimes I can not figure out what he wants/needs but we are working on it.

As for me I am counting the days until Ken is just working one job. I am tired of doing all the parenting! He is gone in the morning when they wake up and he is gone for dinner time and bedtime. It has been hard. I just want to have ken around again to hang out with. I miss him and the fun we have. I have been trying to plan stuff to look forward to each week but its hard with 2 small kids. I am alone a like more than I like to be. I have been also having a hard time with my parents not being around which makes me really miss my grandpa Guetchow a lot. I have been dreaming about my mom a lot the last few months and the have not been the best of dreams which is even harder. I don't think i will never understand how the mind works. So for now I just push forward.

I am hopeful that 2017 will be much better that 2016 but still Ken and I have some big decisions to make in the next few weeks 2017 and I am nervous because as always my kid well being are the most important in my mind. As for now I pray a lot about everything and know that God is really the one with the plan not me. I am never truly understand his plan but knowing that it is there is some what comforting.

October is almost over!

This month is finally over! It has been a long one. Michael has been sick a lot and also started ABA therapy (25 hours a week), Ken has been working 2 jobs (almost 70 hours a week), I am have been dealing with my own health issues as well and we also had to some unexpected car issues (470 $ worth). I have also been reminded of how lucky I am to have so many people that love and care for my kids. With all that has gone on this month I have had to have lots of help for loads of people many of them are not related to me by blood but I consider to be part of my family. It fills my heart with such joy when I see my kids with all those amazing people that have welcomed them into their hearts. We also took some family photos with Grandma that turned out great and I am so happy to have them.

But there were many many good things as well MOST importantly Michael turned 2 years old!

It feels like he has been here a lot longer than 2 years! So much has happened in that amount of time. I am I truly luck to be his mommy. His birthday was perfect and there were so many people around him that love him so much. He is changing so fast and improving so much with his speech. He makes animal sounds now and loves singing. His favorite song is The wheels on the bus. His Favorite book is The truck book. This favorite toy is either a car or a ball and his favorite word is MOMMY!

Kaylee has had a great month at school. She is learning so much and is growing up so fast. Just listening to her talk takes my breath away. It is so hard for me to believe that she is only 4 years old. The one thing that I am so jealous of is how she prays and just talks to God! She says God is inside me and with me forever! She reminds me of it too when I am sad she tells me to talk to God about it!
The best part is that she is asking how to spell everything that she can think of and she is starting to spell things back.

This month/year has been the hardest on Ken and I as well. Ken and I are BEST FRIENDS and this year has gotten in the way. I think that for me the hardest part is that we don't get a chance to hang out and have fun and be ourselves. I think that this month we only got the 2 days in Disneyland to be our old-selves with the kids and I loved every minute of it. this month it has been 17 years since our first day (that is almost a half of a lifetime together). I know that it is just this hard time for what will really turn out to be a short time out of our lifetime together but it is still super hard. I know that we can work through it.

June 2005

2004

December 2000

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.