Mastering "In"

Riley has been receiving OT services for 3 years.  And one of the goals that they had been working on with her is to get her to put things "IN."  In December she aged out of the Infant and Toddlers Program (I&T) and started ECI (school) in January.  In her very last session with her I&T OT, that she had for 2 years, she was able to demonstrate "IN."  This was such a thrill for Maureen (the OT) that she got to see her master a skill she had worked so hard to help her with.  Here is best video (and it is not very good) of Riley showing the skill.  She of course stop doing it better when I pulled the camera out.

This video is from 12/17/12:

Riley has now been in school for alittle over three months. And I think we can truly say that she has master the skill of "IN."

This video is from 4/7/12:

What a difference three months can make!!!

Not so fun way to spend a Friday night...

I was looking forward to spending a quiet Friday evening with Riley as so she decided not to take a nap for my mom. Instead I spent the evening riding in an ambulance and in the ER.

Riley has become a climbing, crawling machine. Which is awesome but comes with it own challenges. She is not very coordinated so she falls down a lot and when she pulls herself up on to things she will just let go and go falling backwards.

On Friday the 22nd she was crawling around on the floor while we were watching Sprout and she decided that she wanted to get closer to the TV. We have a TV cabinet that has door was glass windows on the front.

She has been climbing up it for weeks she will be in her knees in front of it and put her hands up on the glass. I have been nervous that she is going to put her hands through the glass, lucky that has not happened. However that night she was wearing velour type pants and as she climbed up her knees slipped out from underneath of her and down she went. She has done this before but unfortunately this time her head caught the corner. I ran over and picked her up she started crying.  I went and got or booboo bunny out the freezer and a binky.  We went and sat on the couch.  She was not a big fan of the ice pack, but I able to get in on for a short period of time.  She did end up calming down, unfortantely it was right around bedtime but after a fall like that I did not want to just put her down.  So we relaxed on the couch for about 15 minutes playing on the iPad and watching Sprout.  After that she seemed to be fine and started to crawl around on the couch not wanting her to fall off the couch and hit her head again I put her on the ground to play.  She started coughing, but it was not a normal cough so I was keeping a close watch in her to make sure her coloring stayed ok. 

She pulled her self up to stand make to the couch and had another cough episode expect this one ended with her vomiting a little onto the couch. I jumped up and sat her down as she threw up again.  As I got her shirt off her she threw up a third time. I had called my mom to let her know that I was going to take her to the ER.  My mom told me to just call 911.  After getting the ambulance on the way I took her upstairs and put her in the empty tub in case she got sick again.  I tried to get in touch with Kyle but of course he was in the middle of a call and didn't answer.

She sounded a bit like she was having breathing issues so I grabbed her oxygen tank but she would not let me out the nasal cannula on her. The paramedics had arrived.  Of course by now Riley is acting more like her normally self, but I still wanted to have her check out since she was vomiting and she hit her head on the same side as her shunt.

I am been calm up until the paramedics got there and I had to explain what happened.  That is when I felt like i was having a panic attack.  The wonderful paramedic kept me calm and helped me gather everything that I needed to get out the door.  They even locked my front door for me.  As we are loading into the ambulance Kyle called me back.  I told him what was going on and that he should come home.

We check into the ER and were seen relative quickly.  My parent came down and Kyle rushed home from work.  Riley was acting pretty normal at this point and had not vomited again.  The doctors order a CT scan.  These are always fun with her.  She has to sit still to get a good picture and she hates laying on that table.  So she ends up wrapped up like a burrito with my hold her head still.  It is a workout in and of it self.  The tech tells me that it should be read 20 minutes and they they read them remotely.  Which is nice for the radiologist.

It is then the waiting game for the CT to read, that was the longest 20 minutes I have ever been through.  Mostly because it was actually like 45 minutes before they told us that the scan was clean.

They discharge us home, but tells us that we need to wake her up every 2 HOURS.  Grrr!  It was a long night.

Update on Riley

I have not done a Riley post in awhile.  

Riley has made some big progress recently she is pulling up on anything and everything that she can get her hands on.  She has also started doing a really hands and knees crawl.  She has been army crawling and rolling for a long time now, but just within the last week or so she has started really crawling.  It is awesome.

She also got her wheelchair because ...SHE STARTED SCHOOL YESTERDAY!!  You heard right my baby is in school.  Riley turned 3 in December and that meant that she aged out of the Infant and Toddlers Program.  In order for her to still receive services she needed to start going to school.

We had our 1st IEP (Individual Education Program) meeting at the end of November and it went very smoothly.  Through Infant and Toddlers Riley was getting PT once a week, OT twice a month, speech twice a month, and the developmental specialist twice a month.  With her IEP she is still getting PT once a week, but she is also getting OT once a week now.  She is still getting speech twice a month.  Plus she is in school 5 days a week for 2.5 hours a day so they are working on PT, OT, speech, and developmental stuff through out her time in the classroom.  But someone is coming to work specifically with her according to the schedule above.

My husband and I dropped her off yesterday and as soon as another child walked in the room it was like we did not exist.  I think she is going to be fine.  Mommy's on the other hand we a bit sad to see her go. I was proud of myself though because I did not cry like I thought I would.  It was a bit to hectic getting out the door and into class for me to get upset.  I think school is going to be a great thing for her.  I can't want to see how much progress she makes between now and summertime. 

We have switched to a new orthopedic doctor because we were unhappy with the one we were seeing before   He put Ri in a cast on her right foot to try to straighten it out more and it worked well.  So she in now in new AFOs that are higher then the ones she had before.  They now come up to just below her knees.  We are going next Friday to meet with the doctor again to discuss the surgery that he wants to do on her knees.  Riley is missing about 20 degrees of flex in both of her knees.  Think about trying to walk with your knees bent at at 20 degree angle, and how tired you would be.  That is what she is dealing with now.  I don't have more information at this point but will after next Friday.  I will post after that meeting.

Here is a picture from Riley's 1st day of school.

New Milestone

I know that I have not posted in awhile.  Life has been a bit crazy.  I hope to have a longer blog written soon so I can post it.  But I had to share.....

 

 

Riley stood holding on the couch tonight for several minutes by herself.  She had done it for a few second last week, but did it for ALMOST 6 MINUTES TODAY!!!!!!!!!!!!!!!!!!!!!

 

 

 

 

Learning to eat

Riley's feeding has never been normal.  When she was first born she was on IVs and getting all her nutrition that way.  This was because she has surgery that say after she was born to close her spine.  Afterwards when we attempted to feed her by mouth her oxygen level would drop.  She could not figure out the the whole suck/swallow/breath combo.  I was only able to tried to breast feed her twice, but I did pump and give her breast milk solely until 4 and 1/2 months then I had to supplement because I could not keep up with her.

The NICU put in a feeding tube through her mouth.  Normally, they would do this through her nose, but she has small nasal passages and a deviated septum.  She would pull the tube out constantly.  She developed vomiting after her feeds.  They tired lots of different things to stop it, reflux medications, motility medications, moving the tube so that it was in her upper intestines instead of her stomach.  None of them worked then they started her on continuous feeds.  Where she was slowly getting food in through her tube all day and night.  They did a reflux test and found she has serve reflux..which we could have told them.  They continued to try different medications.

At one point they thought that maybe she has a milk allergy and out her on soy milk.  It didn't help so she went back to breast milk.  Through all of this her weight gain was slow as to be expected.

As the reflux got worse the doctors suggest something call a nissen fundoplication.  Basically the muscles at the top of Ri's stomach were not doing their job keeping her food in her stomach so she could digested it.  So what the nissen does is pulls her stomach up and wraps it around the bottom of her esophagus.  Thus created the sphincter need to keep her food in her stomach.  The standard practice at the hospital where Riley was was to place a G-tube when doing the nissen.  This a feeding tube that is placed in her belly allowing us to feed directing in her stomach.

Her reflux was thought to be playing a big part in her continued breathing issues where her oxygen levels were dropping.  The thought was that if we could avoid the reflux with the nissen and the oxygen drops during feeding by placing the G-tube that she would be good to go home.  We decided to go through with the procedure.  After she healed it worked to stop the reflux but did not help with the oxygen levels.  She ended needing a trach placed in order to get her oxygen to stay up.  I will do a separate post about our decision for the trach, what it is like to have a child with a trach, and more. 

So back to her feeding.  Our next goal was to get her off the continuous feeds to what is called a bolus feed.  This where she would get her feed all of one time.  It was a bit of a slow process.  We went from continuous to 4 hours on feeding and 4 hours off, then to feeding over 2 hours, then to feeding over an hour, and finally to over 1/2 hour every 4 hours.  Riley started to gain weight consistently after that.

After we had her home for awhile we wanted to try to start her on some oral feeds, but we had get clearance from one of her doctors.  First we tried her on milk on a spoon and that did not go well.  When we tried some stage 1 foods she did better.  The doctor had only give her one baby spoon full of food, in small bites.  Then once a week we increased it by one baby spoon fully.  It several months to get her eating a enough food that they could do a swallow test on her.  In November 2010 we went in for the swallow test, what they do in put barium in her food and they feed her and as she is eating they are x-raying her to watch how she was swallowing to make sure she was not aspirating on her food.  We were told that she was doing wonderfully and was not aspirating and was good to start oral feeds full time. We were so excited because it meant that she could have icing for her birthday.

You would never know now that she had some many issues with eating.  She does not turn her nose up at any baby food that we give.  If we don't feed her fast enough she yells at you.  We are now working on getting her to take all of her fees oral and not using the G-tube at all.  She is learning to use  a sippy cup and is doing wonderful.  Though if she sees the food before she finishes the cup you have a hard time getting her to take it again until the food is gone. 

Recently we have started her on solid foods.  She is getting good at picking up the Gerber puffs with her whole hand.  She has had some scrabbled eggs.  And I have a few other foods that I am going to try her on in the next couple of weeks (raspberries, peas, avocado).  She had some cheese today and seems to like it.  We might give a grilled cheese sandwich soon too. 

If any one has ideas for fingers food or handmade baby food let me know.  I just started today making some of her food and I am looking for ideas.

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.

Gait Trainer

My daugther amazes me everyday.

Kids with T18p don't normally start walking until two and half years old.  So because of that Riley gets PT once a week.  About a month ago her PT brought in a gait trainer.

A gait Trainer allows Riley to walk around even though she is unable to stand on her own currently.  At first she was able to move it backwards alittle bit, but it was not deliberate.  But on Sunday night we put her in it and she as moving forward all over the place.  I decided to see if I could get her to deliberately move forward.

So I grabbed her most favorite thing right now . . . bubbles and sat on floor.  And look what happened.

She moved it all the way across our KITCHEN.  I was sooo proud of her.  She is making great strides and it makes my heart soar every time I see her do something tI have never seen her do before.

Carpi Demi

Recently I have been following the jounrey of Kellie.

Not long ago she lost her daugther to SIDS.  She has been sharing her grief and how is she coping.  After reading her posts she always makes me realize how precious life is and how it can change in a moment.

As hard as Riley's 1st year was, I appreciate every moment I have with her.  Everytime that she learns something new it is a great trumiph.  Yesterday I watched as Riley banged two toys together.  And I was so excited, this is something that her developmental specialist has been working on since she came home fromt he NICU in Apr 2010.  This simple act any other child would do naturally is such a milestone for her.

Remember to kiss your loved ones whenever you can.  And always tell those you care about that you love them whenever you are parted.  Even if is only going to be for a short time.  You never know what the day will bring.