The Hailey Herald

The Hailey Herald

Friday, September 30, 2011

31 for 21 Blog Challenge

So this morning, I decided to post about the 31 for 21 blog challenge for the month of October but I got side-tracked...that can happen a lot to me.  This was different.

At preschool drop-off this morning, I found out about a blood drive that is happening Monday in honor of one of the teacher's grandson's who was born with a fraction of his total blood volume.  His blood had been leaking into his mom's placenta and no one was aware of it.  The little boy is still fighting and is close to coming home, but right now, no one knows of his prognosis.  The blood drive was coordinated out of gratitude to all the people who donated and saved this baby's life.  To give help others.

When I came home, I was looking at a local news website and came across an article that moved me.  A local news anchor is donating a kidney to a local woman who is living with only 11% of her kidney function.  I watched the footage and sobbed.  How fabulous that someone will offer to be a living donor to help save someone's life!  There will be a series of news stories about organ and tissue donations as both of them recover from their surgeries.

The point of me telling you about both stories is person really can make a difference.  The world is full of "one persons" that are trying to make a make the world a better place.

So, in light of that.  Let me tell you about 31 for 21.  Tricia from  Unringing the Bell is hosting the 5th annual 31 for 21 Blog Challenge for Down Syndrome Awareness month.  October is Down Syndrome Awareness Month.  Medically, Down syndrome is called Trisomy 21 (T21) is a 3rd copy of the 21st chromosome.  The challenge is to blog every day in October...all 31 days.  Therefore, 31 for 21.

Every day won't necessarily be about Down syndrome.  Some of it will be our normal, boring life!  I don't expect to change the world with my blog but I am trying to spread the word that Down syndrome isn't that can be and is normal. We are so blessed with our blue-eyed little girl!  My goal with my blog is to help ease the mind of one person who has received the diagnosis either at birth or prenatally.  Blogs helped me after my daughter was born...I hope to do the same!

Here are a few pictures of my beautiful little girl....

Sophie has become a mainstay in our house...with the amount of slobber running down her, we can only assume she feels good on those swollen gums.  As you can tell by Hailey's double chin and full cheeks...she likes her food and she doesn't miss a meal :-)  Her prefers helping and likes to keep an extra spoon close by.  I can't seem to get enough of those dimples!

Tuesday, September 27, 2011

Where's Hailey....found Jesse..

My husband seemed appalled that I dressed this daughter like this today.  It was too funny to pass up and we were hanging out at home anyway.  Hailey seemed a little less than thrilled with it too!

Peanut had therapy this morning.  We reviewed the summary from her evaluation at the Down syndrome clinic last week.  It is hard to believe but she has even made huge strides since that eval just a week ago.  She has even gained strength and mobility since her EI evaluation on Thursday.  Every time I feel like she has hit a plateau, she pushes a little harder and accomplishes the next step and puts herself a step closer (or a move closer to crawling).  She has been obsessed with standing on our laps for the past week and has been pulling herself into the crawling position.  Just a week ago, she needed support to be put into that position and then extra support to stay in that position. 

The rest of the day we played it low-key.  Hailey is generally wiped after therapy.  Apparently, I am looking too hard into toys for her to play with.  She spent about 30 minutes rolling around, jabbering, and laughing with this blanket. 

Overall, just a typical day in our household.  Just wanted to share the pics of Jesse :-)

Monday, September 26, 2011

Happy 7 months!

I seem to reflect a little more with Hailey's monthly birthdays than I did with the boys.  Hailey has come so far, we have come so far.  I don't think I will ever forget how the words sounded and how I felt when the doctor told us Hailey has Down syndrome.  I felt like life would never be the same and I thought it was the worst thing in the world.  I, honestly, am upset with myself.  I am upset that I was so uneducated on Down syndrome.

I was so wrong that Down syndrome is the worst thing in the world.  We are so incredibly lucky.  God blessed us with her.  Yes, there are many things that are more difficult for her.  Sometimes it has taken her longer to hit  a milestone.  Yes, she will have different struggles than the boys will.  She will see the world in a different light.  Life is settling into our "normal".  Her heart surgery is over and we are through most of the initial testing (ophthalmology, audiology, thyroid, etc).  We are into a routine with her therapy.

I've learned a lot about myself over the past 7 months.  I am a stronger person than I thought I could ever be.  I have to be.  My family needs me to be.  I don't take as many things for granted.  I thank God more often for all my blessings...big and small.  We celebrate more of the little things.  I try not to judge other people.  You never know what their story is or what obstacles they have to overcome.  It's not my place to judge. 

I was right about one will never be the same.  We have complete chaos now...we have three kids and we are outnumbered!  My heart will never be the same.  I've watched my little girl overcome so much and she is only 7 months old.  She prefers Daddy over Mommy at bedtime. She's a fighter, she's strong, she's lovable, she's curious...she completes our family. 

Happy 7 months my sweet baby girl!

Now that I'm getting up like this...what am I supposed to do?

Thursday, September 22, 2011

Last one for the week...

Finally, the whirlwind week of evaluations and appointments is over.  This morning our therapist and service coordinator from the county came for Hailey's 6 month evaluation.  In some ways, it seems crazy that she has been in therapy for 6 months.  Socially, little miss butterfly sailed with flying colors.  Honestly though I had no doubt of that.  They continued with Hailey through the rest of the testing.  She was extremely cooperative.  After they were finished and calculated all the crazy state grading, L gave me a brief summary.  In the eyes of the state, Hailey is not delayed.  If she did not have Down syndrome, she would not qualify for the program based on her abilities.  Yes, we know that she has areas that definitely need strengthened and that we need to continue working as hard as we are now but I was pleased to hear that as of now she is not considered delayed.  It is nice to know that she has been evaluated by private therapists as well as our county agency with the same results. 

We topped the week of appointments with shopping at the outlet mall.  I finally found shoes that will stay on Hailey's feet.  Her poor little feet get so cold.  I had to find something to keep them warm.  My biggest weakness was the new Disney outlet.  I can't wait to post the cute onesie I picked up for Hailey.  I hope it looks as cute on! 

I had to post this pic.  I "think" it is of this morning's sky.  I'm not even sure.  I sent Ian with the camera and told him to take pictures of things he liked and things he thought were interesting.  I found this one when I downloaded them tonight.  I could do an entire post of "Life Through the Eyes of a 4 Year Old".  It was very foggy this morning and you could actually see the air "move". 

I do understand more now when mom's of older children that have Down syndrome say the first year is tough.  It is all an entirely different world.  The appointments, the worries, the therapies.  For most parents, this is foreign territory and it can be very overwhelming.  Fortunately, this was not a typical week.  Hailey did great through all of it.  She cooperated and strutted her stuff, so to speak.  She is a fabulous little girl!

I really like this Nemo...he's just my size.

Wednesday, September 21, 2011

One more eval down, one more to go....

Well for the second time this week, my dear friend and I ended up stuck in the rain on our morning walk.  Luckily today was just a very light drizzle, unlike the downpour of Monday!  After that I had the very uncomfortable chore of getting changed in the van.  Thank goodness for tinted windows and the downpour that started once Hailey and I were snug in the van! 

Peanut and I headed to her audiology appointment.  Fortunately today's appointment was at a satellite office of Children's and we didn't have the joy of driving downtown in the rain again!!  I can honestly say that I have learned more about children's health and testing over the last 6 months than I have in the past 8 years that I have been a mom.  The boys fortunately do not have hearing issues....just listening problems!  They have learned selective hearing at a young age! 

Hailey passed her newborn hearing screening.  It is recommended that children with Down syndrome have their hearing tested every 6 months.  Hailey's appointment was in a small closet-size room.  It almost looked like I would imagine is a sound booth.  They started by looking into her ears to make check for fluid and to see her eardrum.  I never realized that your ear canal looks to hairy when it is magnified.  It was interesting.  They preformed a couple tests that involved placing probes in her ears.  They are to check for "normal" ear/hearing function and the performance of the ear drum.  Then the longest test was a behavioral hearing test.  During this test, the audiologist sits in another room and watches Hailey through a window and administers different sounds at different volumes and in different areas of the room.  The other person (I can't remember what her title was) would move her fingers, have Hailey play with a toy and distract Hailey as much as she could.  She was reading Hailey's facial cues to see if Hailey which sounds Hailey reacted to.  I wish I could have seen her face.  She was sitting on my lap facing outward.  I think there were a few sounds she actually reacted to but they weren't sure.  On the desk in front of Hailey was a toy in a dark black box.  When she reacted to the sounds, the toy would light up and move as a reward for Hailey.  I sort of felt like she was one of the Pavlov's dogs! 

After the evaluation, they decided that they would like to see her again in 3 months.  The audiologist said they didn't see any major concerns in Hailey's hearing.  There were a couple reasons they thought she didn't react to some of the sounds.  Hailey has learned to tune out some noises...she has to incredibly loud and active brothers.  She is not in a quiet house and has learned to ignore some of it (or lose her sanity).  Some of it also has to do with her age.  The audiologist thinks that she might react to more of the noises when she is a little older.  Honestly, I think the boys would fail that testing!  When either of them are engrossed in a project at home, you can be a foot from them and they won't hear a word! 

I'm happy with the appointment.  I wish she would have reacted to more sounds but they didn't see anything wrong.  There was no fluid in her ear and everything is "working" the way it should. 

Ironically, yesterday, the nutritionist told me that we need to be feeding Hailey more food.  Well, apparently, my little miss understands more than we give her credit for because she was quite vocal today about being fed.  She loved feeding herself a cracker tonight.  It was funny watching her work on her coordination.  There were a couple of times that she wanted to take a bite so bad but kept missing her mouth! 

Tomorrow Hailey has her evaluation with early initiative (Help Me Grow).  It seems to hard to believe that Hailey has been in therapy for 6 months already!  Hopefully tomorrow I can pick up my new camera (my old one was unrepairable...thank goodness for extended warranties!)  I'm tired of fighting our new amateur 4 yr old photographer for my small point and shoot.  I think I need to make that one of my posts....Life Through the Eyes of Ian...ha!!!  It has been funny!

Such a trooper!

Here are a few pictures from the weekend

You want me to do what?

I might get this sitting thing down pat sometime.

Big brother Ian wanted in on the pics.
Self portrait - he is turning into our resident photographer.  Not bad for a 4 year old!
The green beans weren't too exciting.  Can we try something new next time!

There will come a day that she will not let him get this close!

Hailey has proven time and time again, what a trooper she is.  Today was no different.  This morning she had her appointment at the Thomas Center (the clinic for Down syndrome at Children's hospital).  I've dreaded this appointment since the day we made it.  I'm not sure why.  I take that back, I do know why.  I daily struggle with the worry that I'm not doing enough, I'm not doing things right, etc.  I have this fear more with Hailey than I have ever had it with the boys.  Today's appointment was positive.

Cincinnati sees plenty of rain and snow throughout the year but every time we get either, traffic is a nightmare.  Well, this morning it was drizzling and foggy.  Double whammy!  We live about 30 minutes from Cincinnati Children's Hospital.  I dropped of the last of the boys at 7 a.m. this morning and made it there with only 5 minutes to spare.  I hate being frazzled and running late for an appointment.  Me, the throws me off.

Miss Hailey was all smiles when we were called back for our appointment.  I think she turns on the charm for medical staff.  She loves to show off that toothless grin and dimples.  Today's appointment was to establish a baseline for Hailey and make sure that she doesn't need any additional therapy or medical referrals.  Making sure Hailey is on the right track.  We started with height, weight and head measurement.  Our little piggy has gained 8 oz since her pediatrician appointment last Monday!  She is up to 14 lbs 10 oz.  It is amazing how great she can be with a mended heart!  We were then escorted into a very large examining room with a huge padded surface (can't call it a bed because it was huge but it wasn't a mat because it was elevated).  The medical assistant asked a long list of questions.  Then the entourage entered.  I've decided that every appointment at Children's includes an entourage!  I know it is a teaching hospital but sometimes it can be a little overwhelming.  Today's appointment included:  the doctor that oversees the Down syndrome clinic, two speech therapists, an occupational therapist, a physical therapist, a nutritionist and a social worker.  They evaluate patients as a team because a lot of their questions and information overlaps.  It seemed like a little much at first but once we started things flowed perfectly. 

Hailey was in the middle of the padded table rolling and laughing.  She showed them unprompted rolling from back to stomach and stomach to back.  She reached for toys and refused to give them up.  She babbled some (she is such a stinker!) and responded to her name.  She communicated hunger and flashed that gummy smile frequently.  Each therapist took a few minutes working with her.  She was a very cooperative patient.  She finally refused to do anything but smack her lips basically begging for her food.    They wanted to watch her eat baby food and also drink a bottle.  Honestly, we have never had her eat food followed with a full bottle.  The timing was never the same.  I was crossing my fingers it would work and it did.  I answered questions in between and during her exams.  Some was history of her birth and surgery.  Others were home life and current therapy and activities.   We discussed our fears with Down syndrome, perception of Down syndrome and the future. 

After about 2 hours, Hailey's appointment was over.  They evaluated her at 6 months...she is 6 months and 3 weeks.  I'm happy with that.  Everyone wants their child to be an over-achiever but I have to be realistic in the fact that she was 4 weeks early and had open heart surgery.  They are going to send me a full summary of the appointment but I remember most of it.  They were happy with how her feeding went.  They said her tongue thrust is minimal.  We are going to continue working with purees for now.  She is going back in a few weeks to work on phasing into table foods.  She is also going to see the speech therapist again.  Hailey didn't babble as much as normal so they want to make sure she is still progressing.  The nutritionist would like us to increase the amount of food she is taking.  We started slow.  Guess we will need to work on that!  They all agreed socially...the girl is a social butterfly!  At one point, they had to start turning their head when they wanted to get her to do stuff because all she wanted to do was look at them and smile.  The physical therapist showed what she would like Hailey to work on and what the next steps are.  They all indicated they are pleased with the therapy she has been receiving the county.  Way to go L! 

They want Hailey to come back for a team evaluation again in 6 months to make sure everything is on track and she doesn't need any other services.  Overall, I am very pleased with her evaluation and visit.  I'm glad that she is on the right course and she is doing well.  I'm happy that I know what we are moving towards and ways to help get there.  I'm so type A personality though.  I want a specific laid out plan...I'm good at that.  It is the part of Down syndrome that challenges me the most.  There is no do A and B and you will get C.  I'm working on letting go of my control might take a little time.  It took me 37 years to get this controlling :-)

After everyone gave their feedback and recommendations, they said their good-byes to Miss Social and left Hailey, myself and the social worker in the room.  It was the first social worker we have met with since Hailey was born.  We talked a little about how we are all doing as a family.  How everyone is adjusting, if we need any additional support.  Hailey did choose that moment to start babbling non-stop!  She jabbered for a good 15 minutes.  The social worker said she was heading to talk to the speech therapist as soon as we left to tell her what she heard.  Hailey has a fear of speaking in front of large groups already!  Ha!

All this time I have been dreading this appointment.  I was so afraid I would be too emotional in a place that focused solely on Down syndrome.  It wasn't like that at all.  It was all very calm and reassuring.  I did get a little emotional when we talked about our experiences with the two OB/GYNs.  The doctor at the clinic encouraged me to write a letter to the practice because their comments were very unprofessional and unfounded.  It was nice to get validation.  To know that it wasn't me being hormonal or over-sensitive.  I will sometime.  It is still raw (I know it shouldn't be 6 months later!).  I want to be able to articulate how I feel without my raw emotions getting in the way.

Well we have one appointment down...two more to go.  We have audiology tomorrow and then an evaluation for our EI (Help Me Grow in Ohio) to see if we hit our last goal, what is our next goal and how she is doing with therapy.  I'm praying tomorrow goes as well as today!

This is what two hours in the car and a two hour appointment will do to you.

I know I am not supposed to have this Webkinz...but what the boys don't know won't hurt them.

Thanks for the spoon.  Can I have more food on it?