Special Kids

It’s already Thursday! This week has literally melted away and the weekend is pushing in again. I LOVE weekends! ๐Ÿ™‚ Especially ones when we can all be together.

Here’s a peek at what met us when we came home last weekend…

july hospital2013 072 july hospital2013 073 july hospital2013 078 july hospital2013 079even her crib was specialized ๐Ÿ™‚

it was wonderful to come home to a restocked fridge and clean house and folded laundry! I wish I had taken a photo of the mess we created when we unloaded our van just to make those of you who cleaned our house , Groan :0) It’s amazing how stuff accumulates at the hospital!

The last few days were busy trying to rearrange our tiny living quarters to accommodate more ‘Kierra equipment’ and meds. ย We switched Pharmecies over the weekend also, which has cut our stress level(of getting her meds) in half so far ๐Ÿ™‚ Our last Pharmacy had a bad habit of ย being very much less then helpful when it came to quick perscriptions and sudden med changes. I was NOT AMUSED Friday night, coming home from the hospital and discovering NO ONE there would mix Kierra’s blood pressure medication for us because it was almost closing time.

I really truly try to give people the benefit of the doubt and second chances and all that forbearing hash ๐Ÿ™‚ ย But that night I was MAD> my daughter NEEDED these meds first thing in the morning. I think they were on their 9th second chance with me. We didn’t go back again. Saturday morning, Steve went in search of another Pharmecy that does compounding and we have been much more satisfied! Here’s a thumbs up to Royer Pharmecy for all you locals ๐Ÿ™‚

I cleaned up the house on Monday and did LOTS of laundry. The kiddos were so glad to be home!

I worked on making appointments and did paperwork

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Kobe sprawled out in his favorite sleeping spot


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She is just THRILLED to be out of the hospital!

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Last night, I heard Kobe saying “KIIEERRAA!” In his amazed singsong voice. Followed with “uh”. I looked over to see him helping her play with her toy and she must have actually gotten a button pushed because he was so proud of her ๐Ÿ™‚

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On Tuesday, i loaded Kierra up and took her to Dupont for lab work. Kobe stayed with Linda Fisher and her girls. It seemed to take forever to get anything done that day:) On the way home, Kierra pulled her O2 off. I thought she might be OK without it for a few miles until I got off ย the big highway, but she got whiter and whiter and her little chest started working too hard, so I pulled off the first available exit. Hmm. I got her O2 back on just fine, but it took about 20 minutes of back roads, down town driving, stop lights, and long waiting lines to get back on track again. I tried to remind myself that I have all day and that i can just relax and BREATHe and keep driving. ย Easier said then done!

I was almost home at 5:30 PM when my phone rang. It was the nurse , telling me to hold Kierra’s injections for the next two doses since her levels were way too high. That was fine with me..holding her injections ๐Ÿ™‚ but then she said I need to do repeat labs again tomorrow. Now that wasn’t so fine with me ๐Ÿ™‚

So yesterday, we packed up again and this time, we only had to go to Lancaster, and Kobe went along. I missed him too much to leave him again ๐Ÿ™‚ Her potassium was high which is dangerous, since it can shut your heart down in a moment if it goes sky high. Steve ran to the pharmecy again last night for another medication that should help those levels.

So today, we will see what her hematology Dr. has to say about those injections…Hopefully her levels are more stabilized!

I have a major love/ hate relationship with medications ๐Ÿ™‚ They do their job, which I am VERY thankful for! but all the side effects cause more meds to counteract those and around and around and around we go ๐Ÿ™‚ It’s a balancing act that requires lots of patience! I’m so thankful for Drs that do their best to keep her healthy! We are hoping to get rid of her Clonidone patch in a few weeks if her blood pressure levels stay solid.

And guess what? I haven’t had to cook a whole meal since we came home! Friends have been so kind in providing food for us! It’s a HUGE blessing! We would have been dining on cereal and eggs and who knows what most likely otherwise:)

Gina and her mom even froze beans for me. WOW! I am so blessed!

And I am savoring small pieces of the blueberry cream custard pie that Linda brought the other night. It’s actually a new kind of pie for me and we are loving it ๐Ÿ™‚

To all of you who supported us in food, groceries, kind deeds, and prayers, THANKYOU! We appreciate it so much!



4 thoughts on “

  1. So GLAD you are home!!!!!!!!! I hear God covering you with grace in every word, even the mad ones. ๐Ÿ˜‰ And I’m so, so happy to hear Kierra is doing better. I was worried about her! Much, much love to all of you today.


  2. Thankful that you are home…Continued prayers and heart felt thoughts for Kierra and your family…Stand strong in the Lord…Our Strong Tower!


  3. Thank you! Michelle. I was pretty worried too! This morning, she is making the happiest noises in her crib and it’s the sweetest music to my ears!
    Nancy, thank you for your prayers and kindness!


  4. YAY for small town pharmacies that compound and do their job right!! YAY for friends that do what friends should do!! and YAY for happy little noises and smiles from your princess!! Love the pictures, especially the one of Kobe and Kierra…super precious. Praying that her levels will even out and that the meds will do their jobs. (and not bring too many yucky side effects.) Hang in there, Mama, you’re doing a great job!!


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