Day 7 of a year of thankfulness

I am thankful for quiet Sundays that turn into a pj day and end with cuddling before bed with Riley as I read her a story. She is very into books now and most days will not let you read a book to her without her trying to turn the pages before you read the whole thing. Tonight Riley laid on my chest like she did when she was a baby and let me read her the entire book Russell the sheep without one trying to take the book from me. Instead she listened and watched me attentively as we enjoyed listening to how Russell the sheep tried to get to sleep.

Day 2 & 3 of a year of being thankful

So I didn't get a chance to post yesterday I am post two today

Day 2 

I am grateful for my mom. (I am sure she is going too make an appearance on this list several times throughout this year) I came home from work yesterday and she had vacuumed my whole house. It seems like something so small but it is wonderful to not have to deal with that when I get home from a long day. My mom rocks. 

Day 3

I am grateful that I was able to motivate myself this evening to do an exercise video. Here is to a new start to a healthier life. 

A Change in Thinking

Recently I was having a conversation with another mom of a different needs child, we were discussing a possible new diagnosis that they were looking into that has the potential to shorten her child's life.  She told me that at this point they don't know if it is true or not, but I commented that it would be good to know because she might do things different if they knew they only had few years with their child.  Maybe they would go to Disney earlier than they would otherwise, or they would take a photo of their child everyday.  She went on to tell me about a friend of hers that is currently dealing with just that with not one but two of her children.  This woman walked into find her kids doing something that most parents would have started yelling about, but she couldn't bring herself to yell, so instead she laughed and took a picture.

This conversation got me thinking why should a child dying changes how we act toward them.  If you only get a few years with a child because they are sick and you then make sure to take a photo everyday or you plan a trip that you would have otherwise put off until "they were older," or you laugh off small misbehaviors.  Why not do that with a healthy child too?

This world is unpredictable.  A health child could be diagnosis with cancer, or get in a car accident.  Look at the parents of the Sandy Hook students.  I am sure they are all wishing for one more photo or one more trip or one more anything.

We should cherish EVERYDAY we have with each other.  Whether it is child, or husband, or wife, or moth, or father, or brother, or sister, or friend.  Don't wait until tomorrow to tell someone that you love them.  We live in a world where we are so focused on what we don't have that we forget to look at what we DO have.

I have recently watched two movies that drove this point home. And yes they could be a bit preachy, but sometimes preaching isn't a bad thing if it gives you a new perspective.  For anyone that is interested the movies were "Courageous" and "The Heart of Christmas."

I watch my Facebook feed all through November and everyone was posting what they were grateful for, but as of December 1st that was no more.  Are we only grateful for our lives and the little things in them on month of the year.  I am going to try to find 1 thing I am grateful for everyday for a year. Some days I may not write a full post but I will try to at least post what I am grateful for each day.

So Day 1 of the year of Thank you for my life.

I am grateful for the joy on Riley's face when I walk in the door from work.  She greets me with a big smile, a yell of happiness, and a giant hug.  It is a great way to end a good day or even better a bad day.

Making Baby Food

I have never been  avery good cook, but I throughly enjoying making Riley baby food.  It is so easy.  I just spent a couple of quite hours in my kitchen alone making her food.  I put her to bed, put some music on and danced around my kitchen as I made food. 

 

Here is what I made:

Peas (she LOVES peas)

Apples

Apple and Avocado (Avocado is the newest thing that she has had and she loves it)

Pear and Avocado

Pear and Apple

Banana, Raspberries, and Gram Cracker

Banana

Yellow and Green Squash

Grean Beans

 

I think this might become a new hobby for me.  I want to figure out which combination she likes best and make a bunch it so in the winter she can still have summer produce.  If anyone has good recipes that their kids like let me know.  Riley is not a picky eater.  the only food she can't have is blueberries.

Looking back

I was going to post this yesterday but the day got away from me.

Riley came home from the NICU on 4/21/10.  She has been home for a whole year.  I was looking back at photos of her in the NICU and thought I would share some of them with you.

12/11/09- this is right after is was born

12/13/09 - This is our 1st family photo

12/17/09 - She was jaundice, she had to be treated with the lights

 2/11/11- She was on and off oxygen throughout

our 4 and half month stay in the NICU

4/10/10 - 11 days before coming home

4/21/10 - GOING HOME DAY!!!

We loved the nurses in the NICU but were soooooo happy to say goodbye to them. 

Look how far she has come.  This is from this past month.  It was the first time she rode in the cart.

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.

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.

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.

Miscarriage story.

In January 2008, Kyle and I decided that we were ready to expand our family.  It was not until August of 2008 that we got a BFP (big fat positive on a pregnancy test).  Now I know that there are plenty of people that it takes a lot longer than 8 months to get that BFP.  I truely beloeve that when you are ready to be a mom that even waitng a month for a BFP can be ahrd.  We were so excited that our family was growing.  We shared our good news with family and a few close friends.

At 13wks we shared our news with the world, two days later I started bleeding. I knew that it was over at that moment, but I had my husband take me to the ER, just in case.  Even though I felt it in my gut, I hoped and prayed that I was wrong.  I wasn't.  I was devasted. 

The whole experience at the hospital that we went was terrible.  They had me drink a ton of water and only after i had finished would they call the ultasound tech to come in.  I had to pee so bad that I was in pain.  And the tech took like 45 minutes to get there.  They when she finally got there she refused to let my husband come back with me.  I was so scared and I just wanted him close.  And she was so rude and cruel about it.  Luckily my doctor was much more compasiate about the whole thing. 

People who never experience a lost like this don't know what to say, they try but some how it just falls short.  I didn't want to hear that I could have more children, I had lost a child.  A child I never got to hold or kiss or even meet.  But my child had a place in my heart from the moment I knew they existed.  After the inital saddness I felt number for awhile.  It was very hard to be around friends especially since several were pregnact at the time.  I was happy for them but angry and sad for myself. 

One day I came across a pregnancy book in my basement and it broke the damn I had built to hold back my feeling and I through it clear across the room and yelled and cried for awhile.  Things got better after that.  I had alot of issues bleeding for several months afterward and so we could not start trying again until February.  We were lucky and the first month of trying again we got a BFP.  And in December of 2009 I delivered our daugther, Riley.

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.

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.

Why don't we have to take a test to be parents

So if you have read Riley's story you will know that she spent 4.5 months in the NICU. The NICU is a very interesting place to be for any period of time. You don't realise that you are holding your breath and how on edge of your seat you are in until you walk out of the NICU. If I never have to hear the beeping and alarming of the monitors in there it will be too soon. Riley is our only child, so one or both of us were at the NICU everyday, most days more than once. We only live 20-30 minutes away. The only days we were not there were during the terrible snow storms of 2009/2010 and even than we tried ad made it on several of days during the worst of it. The other time was when we had to go out of town for a wedding and then we made arrangements to have someone come see her every day. My mother also went most days as well.

Riley was in a hospital that had a very large NICU, it had upwards of 45 babies at a time. In comparsion a friend's son was in the NICU in a differnt state for 6 weeks that only had 10-15 babies. In the room my daugther was in had 12 babies in it. I was amazed at how many of the babies had no vistors at all. I understand that people hjave other children that may keep them away or maybe they lived far away. And we were there alot, but all day everyday. But we made friends with the nurses and know that some of the babies where never visited at all.

Now I am the first person to say that the NICU is a stressful place and I get that everone deals with stress in different ways. But there was a primee that was there before Riley was born and was still there when we left. And I never saw a parent, a grandparent, no one. This poor child jsut layed in bed all day everyday. The nurses would pick him up when they could, but they could not just sit next to him and talk to him, or hold his hand, or tell him that they loved him. I just don't get that. How selfish do you have to be to never visit your sick child? It killed me that days that I could not get into the hospital to see Riley, on those days I would cell the NICU severla times a day to check on her. But not seeing her for month... Can someone explain it to me please?

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..