Thursday, June 28, 2012

Months 13-14 pretty subdued

March and April were pretty uneventful months around here which was kind of nice.  Harper Kate made a lot of good progress at therapy.  In fact we found a chair that she can sit in and work on her neck strength and will hopefully play with toys!  She had some dr appointments, a swallow study that showed it was ok for HK to eat puréed foods, and a ct scan of her head which has continued to show no swelling of her ventricles which is a huge praise!!  HK is so funny.  Sometimes I wonder if she is too smart for her own good.  She has started falling asleep in therapy on occasion in the middle of the session.  I guess that is her way of saying, I've had enough thank you so we've had to on some occasions have "naked therapy" to wake her up!!  Hahaha. I've got a pistol on my hands no doubt.
  In March, Harper Kate got a new cousin!!! Jarod's brother and his wife had a little boy named Owen, so we headed up to Nashville to see my new nephew. It was so much fun to meet him and hang out with Eric and Kristen for a little bit. We were also able to visit with our friends we left when we moved away, so it was the perfect weekend trip! Thankfully we were just able to have a good time these two months because little did we know, but looking back now, May and June would be filled with 15 days total in the hospital and some exciting times that have already been blogged!! ;)
  The most exciting HK event of March and April was that HK got two teeth and so we've started brushing them!!! Yet another milestone we are so happy to meet! Enjoy the pictures of this bundle of joy we live with. She's one more mess, but we wouldn't trade her for the world!

New chair! 

Good morning Mommy!  My hair is a MESS!

Naked Therapy

Naked Therapy again! 

Not sure she is ready for this swallowing study

New discovery!  I have feet!!!

What a pretty little girl!

We went to visit Gracyn!

I'm a big girl in my chair

Out to lunch with Hannah & Mrs Jessica

Mommy & HK at lunch with Daddy

I have a tooth!!!!!
pretty in pink

This girl LOVES her some heat!

sitting up pretty like a big girl

Going, going....


HK's face the first time she saw a picture of her new cousin, Owen!

pool time!

HK ready for her CT Scan

uh, Mom, I'm strapped down headed into this big machine...are you sure about this?!

Harper Kate's cousin, Owen Daniel!

Owen!  My new nephew

not really sure about this brushing the teeth thing!

Wednesday, June 27, 2012

Birthday Party Celebrations

When Harper Kate was turning 1, it was such a big day. After all we had been through with her, the fact that she had lived, and lived well, for a year was worthy of a big celebration!!! We decided to have a rainbow birthday party to celebrate the happiness that HK brings to our life!!! I don't have much to write about the party except that Jarod and I are incredibly blessed with family and friends who celebrated with us!! Our friends gave generously to a fund for us to get HK special equipment that she will need. We are so humbled to see how much our friends and family would sacrifice because of their love for our daughter.
Not only did we have friends and family in Birmingham celebrate with us, our small group from church had a surprise party for her and gave generously to us, then my friends and their sweet children joined us for a party at my friend Leslie's house. I'm telling you, this girl is loved more than she will ever realize! I'll leave you with some pictures of the week of celebrations!!!
I'm sorry there are no captions for the pictures. I'm writing from my iPad and I can't put the uploaded pictures in any order. The pictures with the banner of a picture from every month of HKs first year was the party with my friends in Newnan. The pictures of HK in her pajamas were the pictures from the small group celebration and all the others was the Birmingham party! Sorry!!

Saturday, June 16, 2012

Yep, we are STILL here!!!

Well, my little HK is holding her own!! She's off the oxygen, which was a huge milestone!!
Since Harper Kate had the stomach bug last Saturday, she hasn't eaten anything. Usually while you are in the hospital they avoid food for a couple days and just give IV fluids. Well, when we started adding back feeds, HK couldn't tolerate hers. So, to give her some nutrition we added in the PICC line and she's been on that ever since.
Today we started back feeds of just pedialyte at 5 cc's an hour. Her normal rate is 50. We will see how she does with that and over the next day or two, we will work our way SLOWLY up to 50 cc's of pedialyte, THEN move to formula. Oh, the patience of these GI doctors to work up so carefully just amazes me!! A little sarcasm for your day....
Pneumonia wise Harper Kate is better. She is still receiving IV antibiotics and will continue probably until Tuesday. We will be owners of a nebulizer machine, and inhaler of steroids and a deep suction machine (for extreme mucus days) when we leave here thanks to the pulmonary doctors. We will also be following up with ENT and Craniofacial specialists, so let's just add three more doctors visits to my list of checkups. I mean, I don't have anything better to do. :).
Ok, I know I sound sarcastic but all of these things are really meant to help my sweet girl. For those of you who personally know her, she always sounds very congested when she breathes. Well, while we have been here we have found out that HK has a very narrow airway which probably doesn't help her swallowing or breathing or coughing up mucus. So the ENT DR will do an evaluation and see if it would be worth removing tonsils and atenoids to give her some more room.
HK also has a chin that goes inward. When the pulmonary doctor moved her jaw forward her breathing was so much clearer! The craniofacial Drs. will evaluate if plastic surgery, that would move her jaw forward, could be helpful. So, you can see that all of these things could really benefit our angel girl!
The HUGE negatives of being here for so long is that HK isn't getting her therapy which she needs DESPERATELY! Please please pray that she will not regress too much in the progress she has made! She has already developed a hyper gag reflux (which she didn't have before), due to the deep suctioning. Please pray that gag disappears so she will not despise eating tastes by mouth when we resume.
Also, please pray for HK to tolerate her feeds perfectly, faster than they expect!
Thank you all so much for your prayers and concern about our child. Your love and prayers sustain us during long days up here in the hospital.
Enjoy some pics from our stay. One is HK when she first got here on oxygen, one is HK having some tummy time, one is my lovely bed that I make every night and undo every morning, one is Harper Kate not being the most ladylike little girl I've ever seen and one is HK off oxygen finally!! YEA!
Love you all,