Monday, November 18, 2013

I can't believe I haven't posted since Halloween!

I have other things to be doing right now but I need to get this out in world.

So much has happened and so little has happened since my last post. Matt now has oxygen in the house but it isn't fixing the problem.  The pulm Matt sees is now off the case.  I am glad that Matt's pediatrician agrees with me. I don't like disagreeing with doctors on my own.

When we saw the pulm he still saw Matt as a sleep patient, I told him our fear (the pedi's and mine) was that Matt was having hypoventilation issues.   He recommended a sleep study and left it at that.  He didn't do one lung function test or anything of the sort.  During the sleep study  I saw Matt's CO2 was high.  It was above 45 all night.  At one point the tech even came in to check the machine on himself to make sure it wasn't just the machine.  When we went into review the sleep study the doctor wasn't concerned about anything.  His only recommendation was to get his tonsil taken out.

Matt usually desats int he AM hours after 6-7 am. (He can sleep much later and keep desating.) The sleep study was supposed to last until he woke up naturally.  At 6 am he had a nightmare, the tech asked if we were ready to leave.  At first I said no, then I saw the time and realized that Matt wouldn't be desatting once he was as awake as he was.   So we packed up and left in hopes that whatever we got was good enough to give us answers.  From the research I had done it should have been enough to give tell us Matt is in fact having issues with hyporventilation.

Needless to say Matthew is not getting his tonsils removed and he is getting a new pulm.  We will either go up to Houston to see the one who works with mito docs up there or the one here that a friend recommends.
In other news, we pulled Matt out of school, he was missing so much because of his constant sicknesses.  Also with the regressing (breathing issues and language issues) it felt like the best decision.  We have also had to go  with daily naps.

I pulled Matt out just in time, last week Matt came down with chicken pox!  So the last 8 days have been spent mainly in isolation.  With that being said... Matt's chicken pox should be coming to a close, but he is coming down with something else.  He has a slight fever and a cough!  Lovely- the few germs he has been exposed to have found a way to make him sick!

Now time for some honest truths I need to get out there but don't want to admit.

- I don't want to homeschool!  I know it is the best decision for Matthew's health, I don't know if it is the best decision for me or for his social needs.  He is so social.

-I hate having to go back to naps, it feels like such a slap in the face.  I know that we need to make a  lot of changes...  I just don't really want to.  I love having a go lifestyle but I know that for Matt's health a stay life style is much better.  (we both are so social and love to go, go, go, this is hard for both of us)

-I am so worried and scared about what the future holds.  Last year gtube, this year oxygen, cpap. bipap or whatever will have to be done.  I just don't know what is next... it feels like we are going from borderline healthy kid, to I don't want to think about it.

-I miss sleep.  I actually didn't put Matt's pulse ox on the other night because I just wanted some sleep.  I felt so guilty.  I never thought we would go a night with out it.

Saturday, October 26, 2013

A very busy and exciting week...

and of course Matt is getting sick again!!!!
Last night was a rough night!  His oxygen was staying up for the first two hours of sleep, then he started desatting, when I woke up Matt I heard him gasp for air.  It was kind of a weird moment to hear him breath so very heavily.  I went ahead and turned on his oxygen but even with oxygen his O2 level was only staying at 94.  That was about 10:30 at about 5am he started desatting again... and it didn't stop!  I spent the next two hours close by while keeping him on the verge of awake to get him to keep breathing.  At one point his O2 level was between 90-92 for 12 minutes!
Finally I got him a little more stable and laid back down, I also turned his monitor down to 90.  By 8 he was desatting again, we had a few rounds of the alarm waking him up enough to start breathing but it ended with him going down to 80 with me trying to get him up.  It took about 3 minutes of me moving him around, lights on, talking to him to get him to wake up enough to start breathing better.  At this point I was done with the night and ready for sleep to be over.
His levels stayed pretty low till he finally woke up.  we need a sleep study soon!  I am planning on calling monday and pushing for a faster sleep study at a different place.  The sleep study place he usually goes to wakes him up at 5 am, his biggest problems are after that.  He needs a sleep study that last until he wakes up.
When he woke up his nose is congested and he has a slight fever... UGH!  We have such a fun week planned!

Tonight is my husbands churches trunk or treat.
Sunday - Fall Festival
Monday - Bible Study
Tuesday - Pumpkin Carving
Wednesday - ZooBoo
Thursday - Halloween
Friday - Mitocamp

I am really hoping today is a fluke and we can still have an awesome halloween week!

Wednesday, October 23, 2013

Sick..... AGAIN!!!!!

Matt has been really tired for the last two weeks so I didn't think much about it this morning when Matt didn't want to wake up.  I also didn't think much about it when Matt's first few steps out of bed led to a fall.  We were running really late this morning because he didn't want to wake up so I didn't take the normal time to make sure he was well.  In the early waking hours it is hard to tell sick vs tired.  
A few hours into school I get a call that he asked to have his temperature taken and he had a fever.  My heart sunk... he has been sick so much!  I don't want him sick again!  
When I got him home he was miserable.  He just fell asleep, but I took him to the doctor.   We found out it isn't strep and it isn't the flu.  What it is, is another mystery virus.  FUN times!  
 

Monday, October 21, 2013

Oxygen

The next step of this journey we are on is probably going to include oxygen.  The last time Matt was sick when we would check his pulse / oxygen levels it would be down.  As I sit here right now his oxygen level is 94.  The lowest they want it is 92.  At night and when Matt is sick we frequent  that number.  His levels have gone down to 85 many times.

At first I wasn't ready for oxygen, but now I am tired of seeing him desat and not being able to fix it. When he starts desating the alarm keeps going off and wakes everyone up, he starts breathing better for a while and then he desats again.  It makes for long nights and a very tired Matthew in the morning.



I started this post last night, I called  his pulm and he told me to take Matt into the ER, with all the issues he wanted to get a work up on Matt.  Last night they did an X-Ray, EKG, and some lab work then we were sent home with instructions to miss school today and see his pedi.  We went to his pedi's office this morning and he decided to go ahead and start Matt on supplemental oxygen as needed.

This is all so  new, but I guess it is where we are heading.

Monday, September 9, 2013

Two Weeks Later...

Matt started school two weeks ago. So I have a lot of catching up to do!  I have so many posts I want to go back and write and hopefully this week I will get a chance to do it.

School has changed a lot of things, mainly  our bedtime. We used like to stay up late and wake up late, I miss those days.  Now Matthew is asleep by eight and I With not going to bed at eight and our mornings start early. 

Matthew is adjusting much better than I am.  Having  Matt gone four hours a day has been a big adjustment for me.  Today seems a little easier than this last two weeks so hopefully this is the turning point.  I have still been a mamaratizi, taking way too many pictures I have a picture of everything that has gone to school.  (let's be honest probably at least 20 a day) 

The weekends mean a lot more now.  This weekend Matt went to SeaWorld two days in a row.  On Saturday I had a baby shower to go to so Matt's Nurse came and took him to Sea World.  They had an excellent time.   Matt really lpves his new nurse! Sunday Kevin  took the  day off and he wanted to go SeaWorld so we went again as a family. 

As always I am eagerly awaiting fall's arrival!   Cooler days means much more outdoor time, I know when it gets cooler it will be much harder to share my days with school.  



Saturday, August 24, 2013

In Just a Few Minutes....

Matt will be walking through the halls of his new school and he will be meeting his teacher! He is so excited and I am so anxious!  I spent all day yesterday preparing.

I will update tonight how it goes!!!

Tuesday, August 20, 2013

It went well.

Matt's ARD went well.  I have heard so many horror stories and I really hope that we don't end up being one of them.  On a lot of things we have the wait and see, lets be flexible approach, which I am okay.  This is Matt's first time in school and I really don't know what supports he is going to need.  They are going to do further evals and we will have another ARD in December.
For Now...

Matt has a flexible schedule so we can see what is best for him, he has to be at school by 9:15.
We are going to try having the home heath nurse there and not having him there.  I am really not sure what will be better.
He will have speech for an hour a week.
He will get his feeds.
They will use his cooling vest.

We are really just going to play things by ear.

Meet the teacher is Saturday and school starts Monday.

Monday, August 19, 2013

It's Tomorrow

Matt's ARD is tomorrow.  I am very nervous and unprepared.  I have been trying to pull stuff together for weeks, but being here I realize tomorrow could go really bad or really good.

Putting your child  in school is a hard decision, I am so excited for him.  I know he is going to love it.  At the same time it is scary to hand over your child's care to someone you don't even know.  

I will post an update tomorrow.

Wednesday, August 14, 2013

The Dreaded ARD!

At the end of school last year, I told the therapist I would rather wait until after summer to do Matt's ARD.  Matt can change so much in the summer I wanted his ARD to be relevant to his needs and not his past needs.  I was told that I had two weeks before school starts to have his ARD and it wouldn't be a problem.

School starts on the 26th, I called last week and found out the people who are required for the ARD will not be back until a week before school.   I am a little worried how things will work out.  I can't even start calling to get it scheduled until Monday and that leaves 5 days to get it scheduled and done.

I am also nervous because I don't know what to ask for.  I know I want Matt to go half days and I don't want absences to lead to truancy.  Other than that I just don't know.  I feel like a fish swimming into a shark tank.

Summer has been going well, minus all the sickness we have been dealing with.  Today Matt hasn't had much energy, there isn't a fever, and I hope one doesn't follow.

Friday, July 12, 2013

Something Else Lost

It has been almost a year since we have been in steady therapy.  After Matt's surgery we were making the switch to out patient therapy.  Shortly after all the car problems started.  We had to go back to home health and there have been issues ever since.  Finally the car situation is worked out, Kevin and I both have working cars - Praise God! I am working on making the move back to out patient therapy that I know will benefit Matt so much!

Today we went to Play and Learn, a local library event.  During the opening song there was a song called froggy in the middle.  The child in the middle is supposed to hop.  Matt was so excited to be in the middle but he couldn't hop.  :-( He danced around a little and recovered well, but my heart was shattered.  Could Matthew really have lost the skill to hop?  Later we went to another activity it was a hopping activity, and Matt could jump a little, but hoping in a row is gone.

I am confident we will get this skill back, but for now I am sad.  He has also had more accidents lately.  When he lost potty training skills in the past I really  regret the way I handled it, this time I have learned to be very patient and just deal with cleaning up messes.  I pray  we don't lost potty training again.  Matt would be devastated.  Most losses he takes in stride, but if we have to go back to diapers I can't imagine how hard it would be for him.

He is also getting sick all the time.  We went to VBS a few weeks ago and after a two days he came down with strep.  This week for his half birthday we went to chuck e cheese and now he has a cold.  I really don't know how we are going to handle school. I am scared.  I know once he starts school he is going to love it, I just don't know if I will be able to keep him in it.

Whatever Matt has - SUCKS!!!

Tuesday, July 9, 2013

Whole Exome Sequencing

Matt's insurance approved whole exome sequencing!  This is a major praise.  Please keep it in your prayers.  I am praying that this test leads to answers.

We see the genetic counselor on July 25 in Austin.

The results should be back by our December appt with Matt's metabolic doctor.   His doctor said that for the test no results can be given over the phone because it takes about 2 1/2 hours to go over the results.


Thursday, June 27, 2013

6/26/13

We saw Matt's metabolic doctor today.  I had been looking forward to this appt because my husband had agreed to  go with us and I knew I would get to spend some much needed time with him.  Spending the day with him was nice, even though the appt didn't really give us much.  I was able to pick up Matt's test results so I can give them to another doctor we are wanting to see in Forth Worth. 

The next step is whole exnome sequencing.  Right now insurance is deciding if they will pay for it, if they won't it will be on hold until they decide to pay for it.   Other than that we are at a stand still.  

Matt doesn't have deep tendon reflexes, our metabolic doctor has been able to find them in one spot, at the lowest level.  Today he did Matt's deep tendon reflexes and I could tell in one of his legs he actually had the reflex.  It was kind of exciting.  The thought went through my head, is he getting better?  Is there a chance Matt will out grow all of this and have a healthy life. 

I asked more questions hoping to find out what it means.  I found out he found his reflexes in I think two places and the one was a little stronger but still very low.  

So much for that thought... it was a nice thought though... so full of hope while it lasted. 

Matt's been having a lot of nightmares..  it is awful, I was just now in the shower, when I turned the water off I heard him crying, ran to him soaking wet, he was just in tears.  I hate those moments, I feel so helpless .  He is just so sad, right now he is cuddled in my bed.

Wednesday, June 26, 2013

Nearly wordless Wednesday

Sick. 

We see Matt's metabolic doctor in Austin tomorrow. 

Monday, June 17, 2013

Half Birthday?

I have thought in the past about celebrating half birthdays for Matt.  I have never done it, it feels kind of silly. I was reading a blog post from a mom who went through infertility and pregnancy loss then her first born son was born with a chronic condition that caused him to die young.  She celebrated 1/2 birthdays for him and her typical child.
There was another little girl with a terminal condition that will take her life way to early, her parents celebrate the months.

I don't know what the future holds for Matt.  I don't know if he will have tons of healthy birthdays and I will look back at these unknown times and regret all the worry or if this next birthday will be his last.   I have been told by more that one specialist that Matt's life will most likely be shortened.  No one knows how shortened.  I want to celebrate the times I have with him.

I am still trying to decide.  I don't think I would have  a big party like his actual birthday, but a day to celebrate him, a few presents, decorations, balloons and some family fun centered around Matthew.

What do  you think, totally silly or something nice?

Thursday, June 13, 2013

Moving on.

With encouragement from  a friend I am moving on to doctors that are in other areas.  I am working on seeing doctors in Fort Worth.  I have heard from two people that they have some good specialist especially when it comes to rare diseases.

Fort Worth is father than I thought I would travel, it is awful that I live in one of the largest cities in the US, but specialist are so hard to find.  We see our Austin metabolic doctor in two weeks.  I don't see there being any changes.  He pretty much told me last time that we are at a stand still.  When you are still un-diagnosed standing still with testing is the last thing you want.

Update on Matt.

The last few weeks Matt has had major GI issues.  He hasn't tolerated his feeds. We switched to Neocate with Prebiotics and added miralax again and so far it seems to be helping.  There was one night this weeks where his stomach couldn't tolerate anything, but other than that we are seeing much improvement.  He as down 2 pounds from all the issues, so we are back to weigh ins.

Thursday, June 6, 2013

Nurses

This week I had to have our first nurse stop working for us.  It was a hard decision, one I have been struggling with for weeks.  I know it is the right thing to do for so many reasons, but when you get so attached it is hard to do what is right.

For the last two weeks we had an excellent nurse, she was so great, but since the hours were not there because they were being split with the old nurse she found another job.  :-(  This week I am still longing for her.  I even texted her today telling her I hope her new job works out but if it doesn't to please come back.  She said she is still in training but will keep it in her thought.  I secretly hope she hates her new job and wants to come back and have fun with us.

I know that the first nurse is really hurt, I hate that I had to hurt her.  The biggest problem was when she started I didn't know what I was looking for in a nurse and she became more of a friend then a nurse.  On top of that she went back to school and her hours were so limited and didn't really fit into our schedule, and really won't fit into our schedule this fall.


An update on Matt.

Matt is of course into the regression time of year.  The language is the worst part and even though it has been weeks I still haven't adjusted.  I get frustrated really easy and I hate that.  It is really hard not to be able to understand your child. I so desperately want to know what he is saying.

We also started with a new speech therapist this week, I have mixed emotions about her.  We finally met our PT this week, and I LOVE him!  He is also a PT for our local professional soccer team.  I know Matt is going to LOVE him!

Thursday, May 23, 2013

Lost

As of last week Matt is now regressing.  I guess my question of what causes regression has been answered.  Soon after the first hot day Matt's intelligibility decreased about 50%.  I hate these first few days, it is so hard.
On top of regression on Sunday Matt dropped his ipad on his big toe.  On Monday we went to urgent care and they put a hole in his toe to let it drain.  Having this "owie" has thrown him into a mito crash.  Everynight we are dealing with fever, vomiting, and Matt being just plain miserable.
I know this time will pass... It just sucks.

Wednesday, May 15, 2013

Summer Already?!?!


I might be in the minority here, but I am really missing the wonderful weather we had last month.  I miss jeans and long sleeve t-shirts.  When it gets this hot we are really limited on the things Matt can do.  

I guess the count down to October begins now. 

Sunday, May 12, 2013

I Miss My Mommy

I couldn't sleep last night, there was such sadness in my heart.  I miss my mom so much I can't stand it. There is no one that can hug you the way your mommy can, and there have been lots of days the last few years I have really needed her hug.  I wish that I could crawl up on her bed and cuddle with her.  I wish that I could ask her questions, hear her advice, or even just hear her tell a story.

I hate Mother's day.  I have had hard feelings towards it for years.  When I had to put my mom in hospice I was dealing with pregnancy loss.  Her last mothers day was right after the  due date of my first pregnancy.  I was so hurt by losing that pregnancy loss that I told my mom I couldn't spend Mother's day with her and I celebrated with her a few days before.  Looking back I really regret that.  I have regretted it for years.  I really hope that she knew how amazing I thought she was.

The worse part is that my mom died so young, I never got to the age of maturity to know how special a mom was.  My mom was a pretty amazing woman and a great mom so there was never a riff, we never went very long with out talking. Even at that, there is a difference from the way you feel about your mom in your early twenties, vs how you feel about her in your thirties when you are a mom.

Today I went to church, my best friend was dedicating her daughter, as I rule I don't go to church on Mother's day.  I hate that I bent that rule.  I cried so much.  I felt like a big baby.  I kept having to remind myself "just keep breathing" and I told my self repeatedly "put on your big girl pants".  When walking my son to his class a woman asked him "Have you told your mom Happy Mother's Day yet?" He didn't respond so I said we don't celebrate Mother's day.  I got a look like I was an alien from outerspace.

I know the day is coming that Matt is going to want to celebrate Mother's day.  I hope and pray that I am able to enjoy that day and not get lost in my sadness. 

Sunday, May 5, 2013

April

April came and went and Matt is still doing pretty good.  I am not sure why. Things it could be...

The feeding tube - getting better nutrition / hydration.
Starting CoQ10 and vitamin E.
The weather has been very, very mild for April.
Matt isn't in therapy so he isn't being tracked to see a difference.  (which could mean, mild regression)

It will be interesting to see what May brings.

Some April photos.

Saw Dinosaurs at the museum. 


Had a few nurse visits, over April I think we had 4-5 nurse visits.  
We had to switch companies so hopefully this will be resolved. 


Visited Pump It Up. 



Spent time with his best friend. 


Went to the Texas Family Fun day with the UMDF. 
Made some new friends and saw some old ones. 




Got in a visit to Chuck E Cheese.

First time riding in outdoor go-karts. 



Played putt-putt. 





And Air Hockey

Went to the zoo. 



Watched Toy Story with the gang.

Indoor go-karts. (We won both indoor and outdoor)

Had our first San Antonio Tubies meet up! 

Friday, May 3, 2013

The Blend

About 2 months ago I started giving Matt a partial blended diet.  Since Matt got his tube I have been very interested in a blended diet, but Matt has always had major constipation issues.  When he was younger his diet was mainly veggies and he still couldn't go potty.

I decided to talk to his GI about stopping miralax and changing formulas.  Matt is now on peptimin jr with fiber.  It started helping, but I experimented with baby food and I had even better results.  He still has some issues, but it is manageable  and miralax is still a PRN med.

Matt's blend

3-4 cans of formula
2 jars of baby food veggies
1 jar of baby food fruit
1/2 cup of baby cereal
vitamin E
8 oz water

With Matt's potty training we have had to change his feeds around.  Before the majority of Matt's calories were night time calories.  Now we have to get everything into the day.  Matt also started having a very sensitive stomach so this is very challenging.  If he gets too much in his stomach he started retching and won't stop. At times zofran works, other times I have to empty his stomach contents.  I plan to talk to his GI about this next month.

I haven't noticed much of a difference since starting the blend, but I know I feel better about it.


Thursday, May 2, 2013

Time Out

I write as I am locked in my room while a 5 year bangs at my door.  Lately I have learned that putting myself in time out has been much more effective then putting Matt in time out.  We were getting ready to leave and Matt decided to start hitting me.  So I locked myself in my waiting for him to do his time out.  It seems like the last few weeks have been full of aggression.  I don't think it is time for a med change, I think some years his regression is much more aggressive.  I know that in a few months it will pass, but it doesn't help with the right now.


The other day at the zoo Matt had the biggest melt down he has had in a while.  It lasted over an hour, both my friend and I had to restrain him.  Another friend how had to help me force him in a car seat.  He almost got out of a very tight car seat, but I grabbed his leg and held on so he couldn't keep trying.


These times are so frustrating, Matthew can be the sweetest little boy.  He has some of the most amazing qualities I could have ever asked for.  Times like this, it doesn't even seem like him.  I wish it was different.


Matt is starting to break things in the hallway.  It is taking a lot of restraint on my part not to go and see what he is breaking.  I know the best thing to do is ride out the storm and check out the damages later.

Wednesday, April 10, 2013

Potty Training!!!!

Again. Matt decided a few weeks ago he was done with diapers. They were causing him some irritation. I pulled out his underwear from when he was potty trained and he decided he didn't want to wear diapers any more. Potty training is much harder this time around, and there have been a lot more accidents. We are still trying it, and over all it is going well.

We are in April and the end of April is notorious for giving Matt major set backs. We are moving ahead seeing what this year will bring. I am hoping potty training will stick around because I just don't know if I can handle loosing it again. Of everything Matt has lost over the years potty training hurt me the most.

 We started partial-blended diet a few weeks ago. It is going well. It is nice to get some real food in Matt's tummy. I am keeping the formula because the formula has helped his GI issues a lot! I am now adding fruits, veggies, and baby cereal. I also started putting Matt's vitamin E in the blend and that has been a huge help in giving it to him.

Tuesday, February 19, 2013

To Start Again...

Today was Matt's first day back in therapy. Even though we have the approvals for all three disciplines only OT has been scheduled. We stopped therapy very soon after Matt's therapy. I wanted to switch to an out patient clinic setting. While waiting for the approval my van broke down. We haven't had the money to fix it and it isn't a priority. We have my husbands van and can manage to get by. If my van ever gets fixed I would like to go to an out patient clinic. I think Matt would enjoy it so much more and get so much more out of it. Today the OT came, so far I don't know if I like her. She doesn't seem like someone who works well with children. She seems like the type of person that expects a child to do what she asked with no questions and doesn't seem like the type to try to motivate well. Not a good mix for a child that is a weak motivator. We have been on the therapy road for years. My favorite therapist of all time I started out not sure if I would like. So I will of course give her a chance. Going back to therapy sucks! It has been such a nice break!

Wednesday, February 13, 2013

Starting CoQ10 and vitamin e

I have pending post in my mind but I wanted to have a quick post mainly for me as a tracker. I got a call today from Matt's metabolic doctor. (well the nurse) She wants me to go ahead and start Matt on CoQ10 and Vitamin e. I missed the call but she left a voicemail. With the CoQ10 he will be on 10 mg per kg and the vitamin E he will be on 200 IU per day. I am hoping to talk to her tomorrow to get more details like if I should split it up, give it to him on an empty/full stomach and best time of day. I did go buy both supplements today so we could start tomorrow. I did not get information on the test for addisons. I assume that it was negative or they would be doing more testing to confirm and we probably wouldn't be starting part of the "mito cocktail" since Addison's is treatable and not with these supplements. Matt also has his 5 year old check up tomorrow. I have been avoiding it, but we need the doctor to write some orders for the nurse so it was a good time to go in. I just hope there is no vaccines to worry about.

Monday, February 11, 2013

Must Remember!

Yesterday was a perfect day for Sea World! The weather was beautiful the park wasn't very busy so there were no lines. Really it was ideal! We got to the park got some popcorn (a must in Matt's book and I am so glad he can eat it!) then rode some kiddie rides and went to feed the ducks. Matt loves to feed the ducks he can do it for over an hour. Then we rode RioLoco. Matt just got tall enough this year so we have only been on it a few times. The ride left us drenched! I didn't have a change of clothes so after a few failed attempts at drying off we had to leave early. Matt just can't maintain body temperature. Even though it was in the 70's yesterday being wet let him shivering. When we got to the car I took off all of his clothes put on a dry diaper and a jacket we had in the car and turned on the heater. I hope that this time I learn the very important lesson always have a change of clothes! When we got home Matt has a slight fever and off and on today he has had a fever. I think it is just a compensation fever getting his body back to normal. I am praying it doesn't turn into anything else. Tomorrow is one of my favorite little girl's birthdays! Matt's best friend Ally turns 5 tomorrow! I can't wait to spend the day with her tomorrow celebrating! These kids are growing up so fast!

Sunday, February 10, 2013

Friday, February 8, 2013

Wednesday, February 6, 2013

Good Reason to Blog

Tonight I found comfort looking in my archives at last February. There were not many post, (only 3), but in one of them I mentioned regression. This year Matt has been regressing again, it worries me. This last few weeks his language skills have tanked. I am guessing he has gone from 80% or more intelligibility by me to maybe 40%, probably less. At first I wasn't sure if it was just because I was sick but his nurse has noticed it too. It is frustrating. I haven't noticed any energy loss. He is more hyper active (always moving) and more aggressive. Of course those are also signs of tiredness. This weekend I got bit for the first time in a long time. He usually tries but I am fast enough to prevent it. Sunday I must have been off of my game because he caught me with his canine tooth and dug in. Around the bite area my skin is bruised 1-2 inches around it. Tonight I took him to Chuck E. Cheese, when it was time to dance with chuck e, he looked like a fish out of water. I wish I had recorded it to compare to the other videos. He knows the dance well and most days looks pretty good doing. Today he was just all over the place. He hit Chuck E and some other kids a few times. His arms and legs were everywhere, his kick was up high nothing like the norm. I hope this is short lived and not just a preview of what this summer holds. Today, he started using his ipad for a communication device again. I need to give it a major update to add all of his new found interest from this year. Side note : A few weeks ago Matt's iPad was stolen from wal-mart. I think someone must have been following us around and when Amy went to use the potty and I looked away someone must of reached in and taken it. It was a hard loss. Whoever did it knew what they were doing and it was never logged onto wifi. We did end up replacing it, it was a hard decision. Such a big purchase. This time we got one through verizon so it has the network so if it happens again hopefully we can track it right away. I am hoping I can find a way to make it almost impossible to turn off so it will stay on and be located. We also have insurance on it, so if it does get broken or loss it will be $200 to replace instead of $800. One more quick note - Tonight Matt started He chewing on his clothes. I haven't seen this in over a year. I hope it is short lived. Matt is always looking for comfort lately. He is needing pacifiers all the time, wanting paci-cow and carrying blankets around. I did buy him some of those adien and anais blankets which is nice for summer time.

Thursday, January 10, 2013

The Begining

I am going to be completely honest in this post. It isn't that I lie about these events but when other talk about them I am kind of quiet, some people in my life know how I feel about these things but I think parts of this post might even shock my best friend a little. When Matt was born I didn't feel that instant connection. Even after he was born I thought that moment where moms hold or see their child for the first time was so magical, so special they weep for joy was an exaggeration. I have even fished around to my friends asking if that moment is real. They say it is, but for me it wasn't like that. My entire pregnancy I didn't let myself get attached to Matthew. After 3 pregnancy losses and years of infertility I didn't let myself believe there was going to be a baby at the end of the journey, so when it finally got there I had to let it sink in. In the delivery room I saw him as my friend held him. I could hold him or even touch him, I just got to look at him. I remember laying there thinking maybe I should try to fake a moment. (much like I did in the sonogram I found out he was a boy) I looked at him, I thought he was such a beautiful baby, but there wasn't a connection. After they took him away and I laid there on the table I kept trying to fake some sort of attachment. I didn't even get lost in the thoughts of him, I joined in the political conversations with the doctors and nurses. In recovery I was alone so it left more time to be left with my thoughts. I remember telling the nurse how cute he was, and that I was glad he was cute because not all babies are cute, but he really was. She told me that at least one of her sons wasn't very cute when he was born. I remember assuring her that my son was cute. I thought some about his name, I mainly thought about how cold I was and how nice the warming blanket felt. When I got back to my room It took hours for me to see him. I was antsy.. I wanted to see him again, I wanted to hold him. I could barely remember what he looked like other than cute. Finally he was brought to my room. (I found out he almost went to the NICU, but thankfully didn't have to) I just looked at him. I was alone with him and I dressed him and took care of him. I counted his fingers and his toes, thinking maybe that was the magical moment. It wasn't. As the minutes, hours, and days went on I began to let myself believe that he was really mine, it wasn't a dream and what I had wanted for so long actually happened. Those first few months with him were amazing! After it sunk in he was mine to keep I loved every single minute. Someone could give me bad news, but I would just smile. Nothing could bring me down. It was the happiest I had ever been. I was a pro at motherhood, I had studied every aspect for years and when it came time to use that knowledge I used it well. Honestly there wasn't any surprises that first year. I feel bad admitting how easy it was for me to adjust. I felt lucky I wasn't married and all I had to do was take care of him. Honestly, I can't remember a time I was ever more rested. I did what I had been told to do, I slept when he slept and I woke up when he was awake. Even between the breast feeding hell times of breastfeeding, bottle feeding, pumping every two hours I got plenty of sleep. Matthew over all was a good baby. There were times he would cry for long periods of time and was un-consolable, but I was there every second he cried doing everything I could. Matt never had to cry it out, almost all of his needs were met the second he groaned. It killed me when we were in the car and I couldn't meet his needs instantly. I was a crazy mom. Looking back I can't believe the way the first few months went. I had a list of scheduled activities on my dry erase board that I followed. There were somethings that had to be done every day, like tummy time, skin to skin, baby massage, singing. Then there was a whole other list of activities that had to be done three times a week. I even kept track of when I did what so I didn't miss any of them. These were crazy things like, baby signing, french, reading time, finger play time, make believe story time, library time. I know there were more but I don't remember them. Some of these things are normal but some were over the top. I laugh looking back thinking about me taking a newborn to the library to pick out books. I had a print out of baby songs to sing! I had picture books in sign language and french! The first year of Matt's life was truly amazing. I don't think I would trade any of it. I remember at 14 months when he regressed losing all language and social skills. It was the first time I felt lost on the mommy journey. I remember thinking and saying I was totally prepared for everything but this. Since that first year I am totally different. I now feel stress, worry, lost. Happy Birthday Matthew!!! I can't believe my little baby is 5!

Wednesday, January 9, 2013

5 years ago

Five years ago tonight I was waiting in the hospital trying to get induced to have my son. I was so excited! I had waited so long to have a son, and in just a few short hours I would be able to hold my dream come true. There was a song I listened to a lot in my infertile years. It meant so much to me, and sitting here tonight thinking of the song it means so much more. It brings tears of joy to my eyes that I have a son, I have the most amazing son I could have ever wished for. My Dream Come True Original Author: Robert Hawkins I love to watch you sleeping All nestled in your bed As one arm rests across your chest The other by your head I hear you softly breathing and a chill comes over me Without a sound I bend down and gently kiss your cheek Chorus: I don't know what your dreaming but your my dream come true I can't believe I'm standing here looking back at you I see your peaceful slumber smile and wonder if I am dreaming too I don't know what your dreaming but your my dream come true Your night light casts a shadow upon the moonlit wall Your rocking horse is small of course but now it looks ten feet tall Is this the steed you ride on when drifting off to sleep Your toy chest there can not be where your secret treasures keep Repeat Chorus I see your peaceful slumber smile And wonder if I am dreaming too Don't know what your dreaming But your my dream You're my dream come true Five years ago I couldn't have even begin to imagine the turns the last five years have brought. I would have never guess that I would know such a sad side of the world, I thought back then the biggest struggle I would face was keeping a child alive the 8 months in my body. I had never heard of any rare disease or the havoc the cause. I has visions of what having a 5 year old would be like, I didn't even know what feeding tubes really were. It really has been an amazing five years. Matthew is so amazing. He is so smart, so funny, so loving, so kind, so cute. At least once a day I wonder how in the world I got to be so lucky to have such an amazing son. I am so excited for today, I can't wait till Matt wakes up and I get to celebrate his fifth birthday with him. We don't have much planned for tomorrow his party is Friday, and Kevin works all day so it will be a day of celebrating just me and him. I think it might make it more special. That day 5 years ago, even though I was surrounded by loving friends it was just me and him.

Saturday, January 5, 2013

Matt is still sick!

His sickness started on Dec 18th. He is finally started feeling a little better but he is still not back to himself yet. Yesterday he was almost there, and then today he took another nap with out meds. Then all day today he was tired and clingy. I can't wait till this passes. I really don't know how to move from here. I am worried about him getting sick again. His birthday party is at Chuck E. Cheese - germ central! I hope he doesn't get over this just to get it again. Matt's birthday is a few days away! I am so excited!!! I need to go buy some more wrapping paper. I Have used two small rolls and I am going to need at least one more! Family members send money that I turn into gifts so there ends up being a good amount. His birthday is on Thursday and his party is on Friday. I am still trying to decide what we are going to do that day to celebrate.