Comparisons

As may times as I tell myself that I can't compate Riley to other kids, I do still fidn myself doing it.  This past weekend we visited with teo sets of our friends both we young kids.  One has a 9 monhts old who is crwaling all over the place and pulling himself up to stnading.  He is also walking using the table or a walking/pushing toy.  The other one is 8 months old but he was born 11 weeks early, so his corrected age is like 5 months.  He was sitting better then Ri and looked like he would start crawling any day now.

While I super happy for both of my friends it makes me a bit sad that Ri is almost 18 monhts and is not doing some of those things.

She is reaching her own milestones.  We have starting introducing Gerber puffs to her and plan in the next couple of weeks to start her on some solid foods.  I hvae  ablog about her feeding started so I will talk about that is a separate blog.  But in the last couple of days she has starting picking up the puffs with her whole hand and putting them in her mouth.  She has also learned to to turn off the light in her bedroom and thinks it is the funniest things.

I know that Riley is doing great.  But every parent wants their child to do the best they can.  My head knows that Ri will reach her goals when she is ready, but it still hurts my heart a bit to see what other kids her age can do and when a child younger than her can do things that she can't.  When she does do something new it makes my heart saor with joy.  I am waiting for the next soaring moment.

D-Day

We have recieved word that July 6th will be decannualization day for Riley.  She will be admitted into the hospital overnight.  We go Thursday to meet with her ENT and get all the details about how it will go.  But we are all very excited and can't wait to see Riley with our her trach.

Sleep Study

I have been wanting to put up two post this week and just have not had the time.  So I am going to combine them into one here.

In March of 2010 Riley had a trach placed due to severe sleep apnea.  It was the only way we were able to get her to the point that we were able to get her home.  Because she had the trach meant that we had to have lots of medical equipment and a nurse at night.  We had to make sure that we had her suction machine, HMEs, suction catheters, oxygen available, saline, extra trachs, and several other things before we even left the house. Plus of course all her feeding supplies and normally baby stuff.  Needless to say it was not easy to go anywhere.  We were not able to go stay any were over night.  So we have been anxious to it is out. 

Over the last year she have slowly worked Riley up to wearing a passy muir valve from 1 minute all the way to all day.  A passy muir valve (speaking valve) is a one way valve that let Riley breath in through her trach but them she had to breath out through her nose and mouth.  This allowed the her to talk since the air would go through her vocal cord.  Once she was able to wear the passy muir valve all day we moved on a cap.  Which is actually like it sounds it is a solid cap that goes on the end of the trach.  When she is wearing it she is not using the trach at all.  She is breathing like you or me.  We worked slowly to get her to wear it all day.  Once she was able to do that it was time to repeat her sleep study and see if the trach could come out.

Last Friday (5/6) Riley went in for her capped sleep study.  This was a exhausting experience for both her and I.  I had to stay up all night due to need to suction her throughout the night.  Riley had to have tons of probes on her head and face, a nasal cannula in, pulse ox on, heart monitor on and two belts around her chest and abdomen.  How they actually expect anyone to sleep well with all of that on is beyond me.  So we get there at 8:30, Riley is normally asleep around 8-8:30.  By the time they get you check in and in the back it is 9, then they spend an hour putting all of this junk all over her.  Riley was not a happy camper, she was tired and screaming (which then meant that I need to suction her about ever 5 minutes).  By the time the tech is done hooking Ri up it in now 10.  Poor girl was DONE! So she is finally able to go to sleep but doesn't go to sleep until almost 11.  At about 12-12:30 the tech comes back in and puts Riley on some oxygen because her oxygen levels at dropping.  She sleep for awhile then at 1 she is up and doesn't go back to sleep until 3:30.  I was begging her at one point to go back to sleep, at least at this time she was not crying. So she finally goes back to sleep and then it is 5:30 and time for us to wake her up and leave.  Needless to say it was a long night. 

I was afraid that they were not going to have enough information to make a decision since she was up for most of the night.  The good news was that they didn't make me take the cap off all night.  I took that as a good sign.

We leave and go to my folks house who live 20 minutes from where we had to go for the test since my husband had to work the next day and I really really needed to sleep.  I go sleep the morning away and Riley hangs out with MomMom and Pop.

When we left they told us that it might be up to 14 days to get the results.  On Tuesday I get a call from Riley's pulmonologist that the results came in.  And Riley did great.  She was having drops in her oxygen level, but that can be treated with just having her on oxygen at night.  She goes on to say that she does not see any reason why Ri's trach can't come out.  My baby girl is going to be TRACH FREE!!!!!!!!!!!!  We are beyond the moon.  I am working with Riley's ENT to get in scheduled.  We do not have a date yet, but we are hoping that it will be soon.

In order to get the trach out Ri will need to be admitted to the hospital overnight for observation.  She will still also need oxygen, but it the long run it is going to be much easier travelling and going out with her.  We had planned to go to the beach this summer but were worried how it was going to work with trach, but now it will not be an issues.  My BIL just bought a house with a pool so Riley will be able to go swimming this summer.  This has opened so many more doors for us and we can't wait to walk through them.

I will keep you updated to when we are going.

Small joys

I thought I would share some of my small joys in life.

1. 80 degree weather in the spring
2. Driving with the windows and sunroof open
3. Dancing like a fool in my car
4. Seeing someone else dancing like a fool in their car
5. The 1st snowball of the season (This has not happened yet but I am looking forward to it)
6. Ri squeeling with delight when I walk in the door after a long day at work
7. Watching Ri play with our 85lb Rotti
8. Talking to a friend that I have not talk to in a really long time
9. Watching Ri laughing until she turns red at bubbles
10. Ice Cream

Sign Language class 2

So I had my second sign language class on Tuesday.  I am pretty impressed with myself with how much I remembered from the last class.  I am kinda nervous because at the last class I have to sing a song in ASL.  I have chosen Rascall Flatts "You."  I have taught myself the chorus and I am having a hard time with the third line.  I want to do well with this.