We made it through our first week of summer with Abigail home and Ethan at camp.  We survived!  And it really wasn’t so bad.  One week down, many to go!

We have a lot going on this week:

Monday:  Cerezyme treatment, all day
Wednesday:  Physical therapy at TCH
Thursday:  Orthotics fitting, Occupational therapy at TCH
Friday:  Pediatrician visit, Developmental therapy at home
Sunday:  Father’s Day and tentative Greyson’s Law Celebration (about 3-hour drive from home!)

Tomorrow should be interesting.  Abby is home tomorrow, so she is going to come downtown with Hannah and I to the hospital.  Daddy is going to meet us there (since he works 5 minutes away), and he is going to take Abby to lunch and to his office for an hour or so.  Then, he is going to bring her back to the hospital towards the end of the infusion, and then I’m going take both Abigail and Hannah home. 

Abby is SO excited to visit “Daddy’s work.”  What is it about a child visiting their daddy’s work that always seems so exciting to them?  I remember visiting my parents work when I was little, and it was always such an awesome feeling being able to go into this whole new world.  She is so looking forward to it!

I just hope Hannah’s treatment begins on time tomorrow, because I am not looking forward to having to deal with Abigail while being tied down to an infusion chair with Hannah for more time than necessary!   🙂

Before Hannah, I would look at other parents of children with special needs, especially moderate-to-severe special needs, and think “Wow, that is a lot of work, how do they do that?  I don’t think I would be able to do that.”   But that is all I saw — the “work” that was involved in taking care of a special needs child.  For whatever reason, I never saw anything beyond that.

Here I am with a special needs child now.  I think back at that feeling I used to have, and now I get it.  You just do it.  You do what you have to do to keep your children happy and comfortable.  It doesn’t bother me that we have over a dozen therapy sessions each month or that we always seem to be going to a doctor’s office for a visit or hospital for some procedure.   I know why families fall into financial distress because of this responsibility and just accept it because the alternative of not providing every need is not an option.  It just becomes a part of life.

But there is a huge reward to all the “work” that goes in to taking care of her.

The reward is Hannah’s smile, her happiness, and her absolute and unconditional love she shows me and the rest of our family.  All the extra “work” taking care of her and researching for a treatment for her is just so worth it just to be able to cuddle with her, smell her, and watch her learn and explore at her own pace.  She truly is an intoxicating child, and I just love every minute I get to spend with her.

I look back on the past year.  This time last year, I was on what would become 2 months of strict bedrest because of pregnancy-induced hypertension (which never left after Hannah was delivered).  That entire time it was always “me” they were worried about because “the baby” looked so healthy and was doing great.  Never in a million years would I have expected what we have encountered since she was born.

There have been a lot of tears, a helluva lot of worrying, and so much fear in wondering the what-when-how-and-where of the progression of her disease.  There has not been a day that has gone by that I haven’t thought about it.  Even with each step forward, it is right there in the forefront of my mind.  It is even stroner on those days we have a set back.

But now I understand why they say “each day is a gift” because with Hannah, every day I spend with her right now is a true gift.   I have spent almost every awake hour of every day with her since she was born.   She is a true light in our lives, and she has positively affected Ethan, Abigail, Daddy, and I.  Our family and friends have fallen in love with her. 

She truly is a special, special little girl.  She is “my” special little girl.

After so many positive steps forward this past week or so, it was inevitable that we take a step backward somewhere.  

For the past three days, Hannah has refused to be spoon fed.  Flat out, not going to have it, cry when she sees the spoon and food refusal.  She has no problem putting a spoon in her mouth and munching on it for an entire family meal (she loves having a spoon in her mouth).  She has no problem putting toys in her mouth and going to town on them.  But she refuses to eat by mouth with a spoon.

We were making such progress in that area, almost getting 3 full jars of baby food in by spoon each day.  She still would never open her mouth for us to put it in, but she was letting us lower her bottom lip and maneuver it into her mouth.  But now, she won’t even do that.

The bright point is that she is not refusing food completely though.  She still gets between 25 and 30 ounces of formula a day plus 4 to 5 jars of stage 2 food in those bottles.  Peaches are her favorite.  Her weight gain has been right on track, and she is definitely not emaciated. 

She just refuses to eat by spoon. 

We start occupational therapy at the hospital next week with a therapist experienced in feeding issues, so hopefully we will make some progess in that area.

I am so surprised that Hannah even made it through physical therapy today. 

She was feeling much better after using the Florastor, and her stomach flattened down quite a bit from the gas that had built up in her stomach.  So I decided to give it a try.  I’m glad I did.  She made it through the entire 45-minute session.

Pam, her physical therapist, is absolutely awesome.  We started very slow and took quite a few “mommy breaks,” but Hannah definitely wanted to keep playing. 

We noticed two huge accomplishments today.  Hannah, while in a sitting position, actually now puts out her hand to balance herself while she leans down to grab a toy!  Yes, she is learning to LEAN DOWN AND BALANCE on her own!  This is a huge first step (now we have to get her to put out her hands when she loses balance, but one step at a time). 

The second accomplishment was using the big therapy ball — she stood up with her hands on the ball and balanced for almost 5 minutes WITHOUT her stomach or other part of the body touching the ball.  My baby girl was standing !!   I tried her out using the sofa when we got home, and sure enough, she can now stand up for a few minutes while holding on to the couch!  (Of course, we still have the falling issues since she just tilts and falls, doesn’t know how to protect herself yet).

I keep hearing in my head what Dr. Eng, Hannah’s genetics doctor, told me last week…the fact she is still making progress in her development is HUGE.  Even baby steps like this are huge milestones for us.  Because, her brain is still letting her learn and develop.  Huge, I say — HUGE!

There is a yearly conference for families of children with special needs that is put on by Texas Parent 2 Parent up in Austin in a couple of weeks.  Even though much of the conference is dedicated to school-age children and autism/down syndrome, there still were a few great sessions that I thought would be very helpful for Daddy and I.  So, we signed our family up to go.

Ethan and Abigail will be in their child care program that day, which will be good exposure because there will be lots of siblings of kids with special needs plus special needs children as well.  So, for as much as this conference is for us as parents, I think it will be wonderful for our kids as well.  Hannah will be staying with us, and if she is “active” during one of those sessions, either Daddy and I are going to sit that session out since we are both signed up for the same sessions.

I’m looking forward to it.  I think it will be a great experience for all of us (especially the Friday night “family gathering”)!

For the past couple of days, I noticed that Hannah’s abdomen was getting bigger.  Then last night after her bath, Daddy made the comment to me that he thought her stomach looked bigger.  Having him make that comment without telling him what I was thinking proved to me that I wasn’t just be paranoid and seeing things.

Then this morning while playing, she was having a harder time breathing.  It was almost back to the days when her spleen and liver were so huge they pushed up her lungs so much she didn’t have much air in them.  It is kind of like a gasping sound, but she really wasn’t gasping.  She was just running out of air quicker than normal.

So I called the pediatrician’s office, and our pediatrician was out of town this week (Okay, he does deserve a rarely-taken vacation — but bad timing!).  So we saw one of his clinic partners.  I was kind of dreading it because this pediatrician really doesn’t know Hannah or her situation, so I was fearful that something would be missed.

The nurse came in and took her oxygen stats — 99% on room air!  Then, we got her naked and weighed her 18 lb 15-1/2 oz.  Those were good signs.

The doctor came in and listened to what I had to say.  He listened to her lungs really thoroughly as well as her heart, and everything sounded good.  Those were the words I wanted to hear! 

Then it was on to the abdomen.  Her liver looked much bigger than normal, at least 2 cm bigger than two weeks ago.  Then he palpated on her abdomen, and she sounded like a drum, a loud drum.  She has so much gas in there that she is about to pop!

Whether it could be a side effect from the amoxycillin for her ear infection (which she still has) or a reaction to the new formula (Grow N Go, 9 mos and up), we don’t know.   She also has been a bit more constipated than usual to the point where 3 times in the past few weeks, she was in agony because she was unable to poop out what turned out to be huge, solid logs (I would have to help her, not fun!).

He prescribed some Florastor for kids that we can use in her formula for gas relief.  If we don’t see a change by Friday, he wants to see her again.  He was very concerned that he didn’t “miss anything” because of her Gaucher’s disease, but everything he said made sense to me. 

Keep your fingers crossed that we can deflate her!