31 for 21: Healthy

Since having Hailey, I have encountered a great deal of expectant mothers.  I know that it is common to hear, "as long as the baby is healthy".  I have removed that comment from my conversations.  Yes, everyone prays for a healthy baby, but it doesn't always happen that way. 

There are two reasons for this.  First off, as long as the baby is healthy, what?  You don't have a choice when your baby is born. He/she is either healthy or they are not.  There is no in between and it isn't something that you control.  You aren't going to have a baby, find out that they have a heart defect and hand them back.  He/she is YOUR child!  You are going to love that child, research the condition and do everything you can to help them be healthy or manage their condition.  Please note here though, I am referring to Hailey's heart surgery and not her Down syndrome.  Yes, Hailey's heart did have a defect.  We researched her condition and our options.  We managed her condition until she started having heart failure.  We chose a course of action.  We were lucky...we won that battle!

When people say "as long as the baby is healthy", most are referring to everything...organ defects, lung issues, chromosomal defects, physical defects.  The "perfect" child.  That truly isn't really the case.  According to the Merriam-Webster dictionary, healthy in humans is the general condition of a person's mind, body and spirit, usually meaning to be free from illness, injury or pain.  Hailey is healthy (knock on wood - I am superstitious)...she is free from illness, injury or pain.  She is not suffering.  She is not sick and she certainly is not in pain.  Her heart is working as well as yours and mine, maybe even a little better. 

Yes, she does see more doctors and -ologists that the rest of the family combined, but most of it is preventative.  We take her to the ophthalmologist to make sure she is seeing correctly.  If Hailey doesn't see well, she can't learn.  We take her to the audiologist to make sure she can hear correctly.  If Hailey can't hear well, she will have issues with speech.  And she won't respond when I tell her "no" or yell "Hailey Dawn" :-)  She sees her cardiologist once a year to reaffirm that her heart is working properly.  We have bloodwork completed twice a year to check her thyroid levels.  Poor thyroid levels can cause a huge gamut of issues with a person.  These appointments are necessary to assure that Hailey is healthy and stays that way. 

Yes, some children with Down syndrome do have other health concerns, just as some typical children have health concerns and illnesses.  We have been very fortunate with Hailey's health...she's one tough cookie!

This is what our healthy looks like in our house and I thank God for it every day.

I had to share this one because I find it so funny!

Thanks Mom....what a great birthday present!

I've been having good birthday celebrations. Mom has even given me cake twice. Wow...it is AWESOME!  I wish they would give it to me all the time but Mom said not to get used to it.  I have received lots of good presents.  I have a baby stroller that they say I'm supposed to walk with.  I can stand but I'm not quite sure my legs know how to move once I'm up there.

I also got a really cool car to drive around outside while the big kids ride their bikes.  Mommy said something about it making me work on my core but I'm not quite sure what she's babbling about.  I just think I look good driving it :-)

My big brothers picked out clothes for me.  They thought I needed Minnie shirts for our trip to Disney this summer.  I liked them because they are sparkly.  My favorite gift was the wrapping paper.  I could have played with that all day but big brother Ian kept taking it away from me.  He said he was afraid I was going to eat it.  I just liked the sound it makes.

My birthday abruptly came to an end when my mommy woke me up at 5 a.m.  I like to get up early but my earliest is about 7!  Then she said I had to eat breakfast.  Really, mom!  I wanted to go back to sleep.  I ate all of my cereal and prunes and then snuggled with mommy on the couch.  At 7 she woke me up again and told me I had to drink my milk.  I never did understand why she made me get up and tell me I HAD to eat until later....  I think I saw mommy eating lunch but she wouldn't share.  No matter how long and hard I screamed and yelled at her.  She wouldn't get me more food.  She gave me some strange orange stuff.  It was okay.  I drank it because she wouldn't give me anything else.

Later we drove to Children's.  The nurses made me strip down to my diaper.  I really wanted to leave my birthday shirt on but they said I couldn't.  The nurse then squirted some yucky stuff in my mouth and I started to get really sleepy.  I don't remember anything after that until mommy woke me up.  I kept trying to go back to sleep but no one would let me.  Mommy said while I was sleeping they checked my heart.  The cardiologist said it looks great.  The patch is doing its job.  She also said we need to watch the pressure on my left side of the heart but the cardiologist isn't concerned just yet.  The audiologist also ran tests while I was sleeping.  She told mommy that I can hear perfectly.  I could have told her that.  I just choose to ignore everyone once in awhile.  I like to be by myself sometimes. Those brothers of mine are quite loud!  I was so very sleepy the rest of the day but Tuesday I was my old self again.

Well....that was until Mom told me I had to go to the pediatrician and I needed shots.  I thought this was my birthday week....yucky medicine that makes me sleep and shots...then they took blood from my big toe....not the best birthday presents if you ask me!  The nurse didn't think I could do a bunch of stuff but mommy corrected her.  Mommy seemed a little miffed at the nurse but quite pleased with herself when she corrected her.  I even added to it by 4 point crawling on the exam table in front of the nurse.  I guess that will show her not to under estimate what I can do.  My mommy was really proud of me then!  Her and my big brother started cheering.  Wonder what the big deal was?  The doctor said I'm growing well (I weigh 18 lbs 4 oz, but the hospital said 18 lbs 8 oz the day before) and everything else checked out.  Mommy seemed very happy when we left. 

I have more family coming this weekend.  I bet that means more presents and lots of attention!  I'm not sure what the big deal is about turning 1 but everybody seemed excited.  I saw mommy cry a few times and looked at me kind of funny but she always followed it by a big hug and kiss so I guess everything is okay!

It's time for my nap so I will talk to everyone soon!

Another birthday outfit.  Mommy said we will celebrate all week!

I think I'm very funny!

Ian wouldn't share the iPad so I decided to take it myself!

Frustrations

I think after finding out that your child has Down syndrome, you are presented with the long list of issues your child may or may not have throughout their life.  To say that list is overwhelming and depressing is an absolute understatement.  It can raise your anxiety level higher than ever and it can make you hypersensitive to all symptoms, behaviors, etc.  It can cause sleepless nights and thoughts raising through your head during the day.  Most of the time, you can focus and put the thoughts and worries in the back of your mind to worry about another day...or when it is necessary.  Hailey has seen more doctors and has had more doctor's appointments in her 11 months and 2 weeks than my oldest has had in 8 1/2 years.  (Yes, I am extremely blessed with an extremely healthy 8 year old...yes, I thank God for that daily).  Last week, we had ANOTHER appointment with the audiologist.  We are still trying to determine if she has any hearing loss, what she can hear, what she can't hear, etc.  It is a frustrating test...I've heard from so many moms that agree.  Hailey is not easily entertained with random noises...unless it is music or the sound of voices.  The noises they use during these hearing tests are very non-entertaining.  She would much rather play with the audiologist sitting across from her or reach for the bubbles that she is blowing.  So...end result...inconclusive.  This makes #3.  Ughhhhhhh.....It is frustrating....it makes me worry....it causes me anxiety.  What is she hearing?  What is she not hearing?  What impact will this have on her development and learning?

The good news about her appointment was there was no (zero) fluid in her ears....this is a first!  I actually cried when she told me this.  The bad news is the next step is a sedated ABR.  An auditory brainstem response (ABR) is a physiological measure of the brainstem's response to sound. It tests the integrity of the hearing system from the ear to the brainstem. The test is performed by placing four to five electrodes on the infant's head, after which a variety of sounds is presented to the infant through small earphones. As the hearing nerve fires, the sound stimulus travels up to the brain. This electrical activity generated by the nerve can be recorded by the electrodes and is represented as waveforms on a computer screen. The audiologist can then present different loudness levels of each sound and determine the softest levels at which the infant can hear.  I'm not comfortable to have Hailey sedated again...she has been sedated for a couple of echos and then also for her surgery.  Luckily, this is just a "twilight" sedation and it doesn't last long...basically like her taking a nap.  Hailey has a follow up with her cardiologist later this month which will require sedation.  Fortunately, we were able to do some rearranging of her appointment...changing locations...changing times...days...etc, but we were able to pull it off.  We are having Hailey's ABR done right after her echo.  We do have to keep our fingers crossed that she stays asleep long enough for both tests.  I'm praying very hard.  I would love to have a baseline of her hearing.  We know she passed her newborn screening but I would feel better knowing whether or not there is any loss now.  Sooo....poor little monkey will have to fast for 6 hours prior to her echo (at 2 p.m....talk about a miserable day) and we will have her echo and hopefully her ABR both completed the day after her birthday.

Hailey seems to like her new blanket.

Love seeing them together!

Found the candy sticks for Hailey's birthday

Ready to go for a Sunday stroll

Let's go mom!

Might as well go to sleep if I don't get a slushy with the boys!

Hat head and wind-blown rosy cheeks

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!