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!!!

Medical history brochure

When Riley came home from the NICU, we came home with a very long list of doctors, 8 diagnosis, and 7 surgery dates to keep track of.  I was not sure how I was going to keep it all straight. We went for a follow up with Riley's pulmonologist and we were talking about trying to keep everything straight.  The doctor mentioned that one of her other patient's mom had created a brochure that they updated as needed. 

I thought that this was a brilliant idea so I went home and jumped on word template and found a trifold brochure.  I added pictures of Riley, all of her doctor' names and phone numbers, a brief history of her, all her diagnosis, surgeries (including dates), medication, pulled information from the Chromosome 18 website about Tetrasomy 18p.  I pulled this information most people don't know about Tetrasomy 18p.  Here is a copy of the template for the trifold brochure with information about Tetrasomy 18p.

As Riley got old and her history got longer, we got more doctors, added more services, and surgeries.  And the trifold brochure was not big enough for us any more.  So I went back in word template and end up finding a Christmas newsletter template that I convert into a 3 page brochure.  This allowed me to add milestones Riley had meet, a longer history, more details about her oxygen requirements, vision, hearing, and sleep study results.  Here is the link for the 3 page brochure with information about Tetrasomy 18p.

All of Riley's doctors love this brochure.  I update it as need.  I add new pictures.  It is great when we meet with a new doctor since her chart is so huge they can quickly look over the brochure and get a better idea about her.  It also has the link for the Chromosome 18 website so they can educate themselves about her too.  It has come in handy in an emergency too.  When you are panicked it hard to remember the last surgery or if her kidney reflux is on the left or right side.  This way you can just hand a copy to the paramedics or ER doctor.

I keep two or three in Riley's diaper bag. I also gave a copy to Riley's teacher when she started school.

This brochure is great for kids with lots of medical needs.  It is also great for when you are taking care of parent and there is more than one person handling the care.  It is an easy way to keep everyone on the same page.

Appearance of a disability

I came across this blog and it is one of my fears in regards to Riley.  When people look at Riley she does not look like your typical special needs child.  When you take a closer look, or watch her behave, or find out how old she is then it becomes more clear.

We have had handicap parking since around the time Riley turned 1.  And until recently she was always in a stroller.  I was always afraid that when I used the handicap tag that we would have some idiot come up to us and say something.  Riley now has a wheelchair, a very heavy wheelchair.  But at this point she really only uses it when she is at school, at other times she is in a stroller or goes right into a shopping cart.  I am still afraid or the person who will stop me and say something or give me a dirty look.  But I can't live my life in fear, so I live day by day.  Enjoying every minute (or at least most of them) that I get to spend with my beautiful, special daughter.

Here is what a child with a disability looks like.  And she is beautiful!!

Feeding Tube is gone

I have been a terrible blogger....but I do have wonderful news.  The feeding tube that Riley had placed sbout month after she was born was removed on November 14th.  We are so excited, we have been working toward this for the last 2 years. 

 

Last year on Riley's first birthday she could not have any cake, but this weekend at her 2nd birthday party she will be about to have cake, smash it, and enjoy it. 

I always wanted to have a cake smashing session with her so yesterday I borried my sister-in-law's really nice camera and had a cake smashing session.  And Riley was all about it. When I edit them I will post some here. 

 

Until next time.

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!!!!!!!!!!!!!!!!!!!!!

 

 

 

 

Hearing aid update

I thought I would do a quick update on how Riley is doing with her hearing aids.  We have had them since March and it is amazing how much it has made a difference in her language.  She still does.  She doesn't have words and probable won't for another year, but she has more sounds now.  And plays with them more.  Now if she is on the floor by herself or in her carseat she just starts babbling.  It is quite funny.  She is more alert now.

I have been quite pleased that she had not been pulling them out like I thought she would.  She has recently being pulling them out but that is because they have not been fitting correctly.  When they are in correctly she doesn't mess with them at all.  We had them readjusted when we were in the hospital to have her trach removed.  But she has not been wearing them since because while she was in the hospital they checked to make there was no fluid in her ears.  To do this the ENT put a little cut in her ear drums.  She would let us put the hearing aids in but as soon as you turned them on seh would cry.  So I think her ears hurt.  We will give it a couple more days than put them back in.

So there is the update on the hearing aids.  If any one has questions about them let me know.

So there is the hearing aid update. If any one has questions about them let me know.

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.

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.

Sign Language classes

So I am super excited about next week.  On Tuesday I start a 6 week sign language class that is offered at my work.  Ever since college I have wanted to take a sign language class.  I was never able to fit into my schedule.

I always planned on using baby sign language with my kids.  That has become even more important with Riley since she will be delayed in the language department and with her hearing loss.  I am really hoping that this class is going to be good, because I am looking forward to it so much. 

I will update about how it is going periodically.

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.

Ri's hearing aids

So we have had Riley's hearing aids for about a week and a half now.  And I am amzed by how little they are and how much of a difference they seems to make.  Riley is playing with sounds more now and I think it is because she is hearing more sounds now.  They are pretty small.

She hates having them put in but once they are in she is totally fine with them.  They are not nearly as much work as I thought they would be.  She goes back on Wednesday to get her hearing tested to make sure that they are helping.  I will post an update after that appointment

Having more children

So both my husband and I have been asked several times recently whether  or not we will have more children.  And if we do if they will have the same issues that Riley has.  Now the second questino is a little harder to answer then the first.  But we do want to have more children, it just is a question of when.

I have one brother and my husband is one of 4.  We think we would like to have 3 kids, I want more then 2 and 4 seems like alot with every thing that we have to do with Riley. 

With the T18p Riley will probable not walk or talk until she is like two and half.  So we would like to give her a full two years of it just being her before we have more kids.

As for whether any additional kids would have the same thing as Riley.  We are not really at an increased risk we don't think for more.  That being said there is still a chance, so there is testing that we can do early on to know whether or not a new baby has T18p or not.

Curious people

At first glance you may not realize that Riley is different.  Though when you take a second look, you would notice her trach, us suctioning her, or us giving her milk through her g-tube.  People's reaction to her some times drives me nuts.  I would rather have someone come up and ask what we are doing or whatever other question is on their mind about her then stare from across the room.  I am happy to educate someone about her or her condition, but don't stare. 

Parents are the funniest though.  kids are always so curious, so you will hear the child ash a question in a normal voice and the parent whispering an answer back.  I have no problem talking to people I don't know, I take after my dad, so I always tell the parent that is tis ok and habe them come over.  The normal question is "What is that?" while pointing at her trach.  I calmly explain that is how she breathsand the child responses with "oh, ok" and that is the end of it

It is natural to be curious about something that you have never seen before.  I would think that most parents of a special child would rather have you ask you question instead of staring at them.  That being said don't ask "What's wrong with her/him?"  There is nothing wrong with my child she just has some special needs, but I love her jsut the same as you love your "normal" child.

Medical Terms

So I use alot of medical terms in my posts, so i am going to put a list on the side bar with the most used ones and a quick overview of each.  If anyone eatns more information about a specific one loet me know and I will do a post about it.

Hearing aids

On 2/7 Riley went for a MRI for a few reasons (1) her hydrocephalus, (2) the fact that she has a shunt, (3) to have a good look at the structures of her brain, and (4) to have a baseline if she has any issues down the line to compare too.  Since she was sedated for the procedure they did an auditory brainstem response test (ABR).  Which is a hearing test were they attach electrodes to her head and record the brain activity when different sounds are played.  We had this one done as oppose to a normal hearing test because we had tried one of those several months back but she was too young and did not understand that things made noise so she failed it.

The results we got back from the ABR were that she had moderate hearing loss.  She is hearing at a 50-60 decibels range.  To put that in perspective 20 decibels is a whisper, 120 decibels is a jet engine, normal speech is at 50 decibels. 

Since Ri is hearing just at speech level we decided to get her hearing aids.  So you may ask if she is hearing speech why get hearing aids.  For a couple of reasons: (1) if you ever get sick or get an ear infections you can loss 20 decibels in hearing so then she would not hear speech, (2) hearing aids will amplify what she is hearing and make it easier for her to understand speech, and (3) she will already have a speech delay due to her Tetrasomy 18p (T18p) so we thought that we would not put any more barriers in front of her. 

So yesterday I took her to get fitted for her behind-the-ear hearing aids (BTE).  I am amazed at how small they were and how light weight they are.  The audiologist took molds of the inside of Ri's ears and they will custom make the part that goes in her ear.  We go back in 3 weeks to pick them up and learn how to use and take care of them.  When we get them I will put up a picture of them.

Coming to terms with her diagnosis

When I found out I was pregnant I could not help but plan and dream of what my child's future was going to be. At 19 weeks we were told she had spinia bifida and we had to shift those dream alittle. So now maybe she won;t play sports and may walk a bit late, but for the most part should be able to lead a pretty normal life. We expected her to be in NICU for a couple of weeks then home. As those couple of weeks changed to a month then 4 months we realized that life would never be "normal".

A month after her birth we got the news that she had a chromosome abnormality*. I remember sitting in a conference room near the NICU surrounded by doctors, my husband and parents on my right and my daugther's primary nurse, Lana, on my left. The genetic counselor telling us there was a problem with her genetic code and that she would have mental retardation and probable would never be able to take care of herself or live on her own. My world came crashing down around me. I burst into tears and heard nothing else from the rest of the meeting.  How could my prefect baby have much a terrible future?  She was suppose to go to college, meet a nice man, get married, and give me grandbabies.  Not being living with me for her life.  I was angry at the doctors, at the world, at God.  My friends all had this perfectly health little babies.  Why were their babies fine and mine wasn't?  I had to moron the loss of all of those dreams. 

When we first got her home some times it felt more like we were her caretakers instead of parents.  There were lots of doctor's appointment to go to, our home was invaded by nurses at night, there were all kinds of medical equpiment that now took over our cute nursery.  Now though I feel more like a parent that just happens to know alot about Riley's medical conditions.  People tell me that I could be a nurse with my knowledge, I turn in tell that I only know alot about a little.  Mind we still have lots of doctors that we see, but it is less often.  And the nurses are still here every night, but they are more like family then stangers.  The medical equipment, well that is still a big part of Riley's room but it is normal now. 

Riley is now 15 months old and I have accepted her.  There are still times when I am talk to my friends about their kids or we see a another child that is Riley age or younger doing things that she can't do yet and I get sad. Then I tell myself that I can't compare Riley to all kids.  She will reach her milestones in time and when she does it will mean even more to us then if she was like my friend's children.

It is weird how your definition of normal changes.  We recently found out that Riley has moderate hearing loss and will need hearing aids, but it in the long run of her short little live it seems like nothing.  I mean I just have to makes sure she wears them and they are batteries.  Easy Peasy.

But this smile makes it all worth it:

*PS I hate that term "chromosome abnormality" she may not be exactly the same as a "normal" child but which child is. Unless you are an identical twin no one chromosomes are exactly the same. So how can we really define normal. Riley is going to be who she is going to be. She will have her own definition of normal.

Riley's Story

When we found out that we were pregnant my husband (Kyle) and I were soo excited. We had dreams for our child and hopes for what they would be. We choose not to find out if we were having a boy of girl. And had a lot of fun tormenting our family and friends.

At 19 weeks we went for a standard ultasound and not had a not so standard appointment. We found that our little bundle of joy has spinia bifida. This is when the baby's spinal column does not close completely early in development. So this meant that we would now be followed very closely. They were also worried about the baby's size, which was about 3 week behind where it should be. So this brought on ultasounds every 3 weeks, visits to the high risk OB/GYN, a change on the deliver hospital, visit to a cardiologist when they could not see the heart well enough, and stress test every couple of days for the last month of the pregnancy. Needless to say it was not stressful 9 months.

They finally diagnosed the baby with Failure to Thrive, which required me be induced on 12/9/09. My labor failed to progress and I had a C-section. So after 46.5 hours of labor my beautiful baby girl Riley Ann made her entrance into the world.

Riley spent the first 4 and half months of her life in the NICU. Before she left the hospital she would have 7 surgeries, and 7 different diagnosis.

Surgeries:
meningomyelocele closure
VP shunt placed
VP shunt revision
G-tube and Nissen placed
Tendon release (local anesthetic)
Tongue/lip adhesion (TLA)
Trach placed and TLA released

Diagnosis:
Fetal Myelomeningocele
Arnold-Chiari Malformation
Obstructive Sleep Apnea
GERD (Gastroesophageal Reflux Disease)
Clubfoot, bilateral
Spina Bifida with Hydrocephalus
Tetrasomy 18p

Since leaving the hospital we have added 2 more surgeries and 3 more diagnosis. She wear AFOs (ankle foot orthotics) during the day and Ponsetti shoes (which are two shoes that are attached to each other with a bar) at night to correct her clubbed feet. In September 2010 we found out that she also have central apnea so now she recieved oxygen at night.

You would think that a kid that has been thorugh as much as she has in such a short time would be a cranky kid. But that is that is the exact opposite of what she is. She is the happiest, sweetiest thing you will ever meet. She wakes up almost every morning with a smile on her face and it brings joy to me heart. So our dreams for Riley may have had to change, and we may to teach the world about her just as much as we have to teach her about the world. But day by day and smile by smile she is teaching us alot too. Until next time folks..