Saturday, March 29, 2008

What's been going on at our house

Well, it's been a while since I had a few minutes to write. Kathryn had a doctor's appointment the Friday before Easter for her Synagis shot and Dr. Stansell's records showed her at 9 pounds, 2 ounces (that was a week ago now though so she may be closer to 9 1/2 pounds now!) We all had a wonderful Easter weekend. On Easter weekend, Maddie and Kathryn got two HUGE Easter baskets from my aunt filled to the brim with goodies, toys, and clothes (I liked the clothes the best!!) They also got Easter baskets from my Nana (who is 88) and a card with money from Nini and Pawpaw. The Easter bunny then visited our house and left a new outdoor chair set complete with a basket of goodies for the girls!! Each of the girls got a new pair of "crocs" - Kathryn's are adorable and don't fit yet, but still a great choice by the bunny!! Easter weekend, we enjoyed the Faith Walk at our church and then Easter church service on Sunday. Nini and Pawpaw went to early service and then came to our house to keep Kathryn while Greg, Maddie and I took my grandmother to the late service. Then we had a nice Easter lunch at our house!

This past week was nice and relaxing with no big things going on!! Mid week Maddie and Kathryn got another Easter box in the mail from Grammie and Grandad with chocolates and a few treat. We have had a nice weekend so far and are preparing for rain as I type. Better run - I hear the thunder.

Faithfully, Kelly

Oh - how could I forget - Kathryn turned 8 months old this past week too!!

Sunday, March 23, 2008

Easter Weekend

Easter Weekend at our house!! We had such a great time!! Happy Birthday Uncle Jason! Happy Easter to all!!

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Friday, March 21, 2008

The rest of the week

Maddie had a great week at home this week with Cheryl and Kathryn since school was on spring break. She slept in, watched movies, read books with Cheryl, had tea parties with Cheryl, and enjoyed my early afternoons coming home!!

Kathryn had a visit from her physical therapist with Early Intervention and she qualified!! Then on Thursday, our main contact from Early Intervention came out to set up our"plan" with goals of what we want Kathryn to accomplish in the next few months. We focused on playing with toys, reaching for toys, rolling over, enjoying tummy time for more than 30 seconds, making cooing sounds, etc.

It has been a great week with not a lot going on, which is definitely a nice change. We are gearing up right now for Kathryn's visit to Dr. Stansell for the monthly Synagis shot! He hasn't seen her in a while and I think he will be shocked at her size. The rest of the weekend should be nice and relaxing as we get ready for Easter this Sunday.

HAPPY GOOD FRIDAY!! We will see you Sunday at the resurrection place to remember that through his death, burial and resurrection, Jesus paid the penalty for sin, and purchased for all who believe in him, eternal life in Christ Jesus. That's something that I am very thankful for today.

Please pray for this Easter Sunday that all who do not know the joys of a life in Christ may find this peace. We look forward to this celebration (and of course who doesn't love Easter baskets!!)

Faithfully, Kelly

Tuesday, March 18, 2008

We heard our first giggle!!!

Kathryn gave Greg and I our first giggle tonight!! It was small each time, but still she did it about 10 or 15 times!! I cried, of course.

Sunday, March 16, 2008

2 new things

Kathryn started baby food this weekend - bananas to be exact. She seems to do ok with them. It takes her about 2 1/2 days to eat 1 whole jar, eating it twice a day, but we'll get there.

Also we had our first family outing today. We took Kathryn to the zoo. She didn't see much; we kept her in her car seat in the stroller covered up, but it sure was nice to be out as a family! We ran into one of Maddie's friends from school so we toured the zoo with Jackson and his parents. They also had camel rides today and Maddie rode. She and Jackson also rode together!

And, by the way, my nephew Reed is back at home. He wasn't acting himself for a few days, so my brother nicknamed him Larry. It seems that Larry has left now and Reed has returned!

Here are a few photos:

Maddie's school easter egg hunt.
Maddie and Alex
The camel smiling for the camera.
Maddie's solo ride on the camel.
Maddie and Jackson starting out.
Maddie and Jackson at the end of the ride.
Kathryn caught sight of a bird (while sucking on her thumb - a new thing!).
My sweet angel!
A Kathryn giggle!!!!
Faithfully, Kelly

Saturday, March 15, 2008

The weekend

What a great weekend so far!! Greg got home Wednesday night late. He seemed very tired and glad to be home. Thursday when Maddie got home from school she was so excited to see him!!! He brought Maddie, Kathryn and I t-shirts from Philadelphia and Madelyn got two post cards in the mail from Greg and he brought her a replica Liberty Bell. She was so proud to take it to school on Friday (and then devastated to realize that she left it there!!). Friday Kathryn had a follow up with the cardiologist regarding the small VSD she had at birth. A VSD is a small hole in the heart between the right and left side of the heart that basically allows "clean" and "dirty" blood to mix. Kathryn's VSD remains extremely small and according to Dr. Colvin, is not a concern. She is to see him again in 6 months, but a great report from Colvin. She also was weighed at this appointment and is now 8 pounds, 11.8 ounces. We are so proud of her!! She is now wearing almost solely 0-3 month sizes and a few newborns still, but a step up from preemies!! I also forgot to share that Kathryn was evaluated this week by Alabama's Early Intervention program and she qualifies!! This is a free service to children in the state of Alabama that are more than 25% behind developmentally in any area - cognitive, physical, etc. Anyway, Kathryn was judged on a 4 month level since that is her adjusted age and she is showing developmental signs of a 2 month old. They have recommended services for physical therapy and occupational therapy. The nice part of this program (besides the zero cost) is that they come to your home, so one less doctor's office!!!

Well, that's about it for our few days. Kathryn is getting stronger each day and Madelyn is such a little lady at 4 years old. She played with her doll today and told me that there was a small problem. Her doll was being rushed to the hospital and would be there for 4 days. She would be living there and would see me when "Sarah" was better. It almost broke my heart - is this what she is seeing from me? The bad part is that when Kathryn is sick, we don't have a choice, but I hate that Madelyn is growing up with extra circumstances. I can see the windmills and tulips in Kathryn's life; it will just be a while before Madelyn can understand. Can I just say though that even though my biggest love in this world (beyond my Heavenly Father) is my fantastic husband, I don't think that life starts until you have children!! Watching the world through their eyes is one of the greatest joys I've known and I think that Mom is the best name I've ever been called!!

Faithfully, Kelly

Snow Day pictures

Snow Day March 2008
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Wednesday, March 12, 2008

Happy Wednesday Morning - Greg is coming home today!

Things have been hectic for a few days with Greg gone, but sometimes not as hectic as I thought. Other times, much more hectic. I guess it all evened out. We had the pleasure of having Nini (my mom) spend the night one night for a girls spend the night party! The other two nights was just me and the girls. We had Pizza Sunday night and watched Ratatouille and Chicken fingers and mac and cheese last night and watched American Idol! Maddie is growing up to be such a big girl and a big helper with Kathryn, although if I ask her to give Kathryn her paci one too many times in one night, she lets me know that she "can't do it all!" (I want to say sometimes, "Well, me neither!!", but then again as a parent I guess we are supposed to "do it all.")

My nephew Reed is still in the hospital in Montgomery. They don't think it's pneumonia now but possibly the preliminary signs that he is going to have asthma like his daddy!! Please continue to pray for Reed, Beau and Brittany and give the doctors wisdom to discern what is wrong. Pray for good health!!

I check a caring bridge website daily for another one of God's miracles born to a wonderful family I have yet to meet. They also have a Katherine and they face some of the same daily struggles we do and then more. In reading their blog this morning, I ran across the following story about what it feels like to raise a child with different circumstances (not necessarily special needs, just different). I could never rewrite what she wrote and could not do it justice, so I took the liberty to copy it here - and of course, give her the credit. Please read!

By Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo's David. the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
We’re still learning about our new destination.

Here's to finding your windmills and tulips each day no matter what life throws at you!! I know we feel like we have a house full of them!! May God bless you as he has blessed us!

Faithfully, Kelly

Monday, March 10, 2008

A great weekend

We continue to have some wonderful days at our house. Kathryn is getting stronger each day and now stays awake much more (making it much harder for myself to catch an occasional catnap)! She is smiling constantly and is even starting to try cooing and giggling in small amounts!! She is holding her head up beautifully (although still a little wobbly) and she is very insistent that she prefers to be sitting up or even trying to stand lately rather than lying down! She has great leg strength for such tiny legs and is "standing" up when you hold her up. She gets very proud of herself when she does these things. I will try tonight to get some new pictures of the new tricks!!

Maddie had a wonderful weekend enjoying the Saturday morning snow we had at our house. She made snow angels and went "sledding" and even ate some snow! She and Greg had a great time while I watched from the front porch to stay near Kathryn! Maddie was very sad to see the snow vanish and she asked why Jesus didn't make enough snow for everyone? She and I then had a girl day complete with haircuts, grocery shopping, and shopping for Greg as he headed to Philadelphia for business on Sunday. So the girls and I are winging it while Greg's gone for a few days!

My sweet 5 month old nephew was admitted to the hospital last night in Montgomery with two ear infections and pneumonia. Please pray for him and Beau and Brittany(his mom and dad - my brother and sister-in-law). It's their first baby and their first big illness with Reed and I know how scary that can be!!

Well, it's my first week of work. Better run so I am not late!!

Pray for Kathryn's continued strength, for Reed's health, for my work week, and for Greg's safe travels. Thanks for the privilege of being a part of your prayers! (I will try to get pictures up tonight or in the next few days.)


Wednesday, March 5, 2008

Additional doctors (ugh), first day at work, and giggles

So I went ahead and took yesterday off to get better from the flu and ended up getting a call from Kat's pulmonology clinic that they needed a referral from her Medicaid pediatrician. Guess what? Kathryn's pediatrician is not Medicaid! So, we had to call and schedule an appointment with her Medicaid pediatrician in hopes of getting the referrals needed and then heading right back to our pediatrician. Lucky for us, our Medicaid doc, "won't do that," so in order to keep the Medicaid, we had to switch to her. Doesn't that make you feel great - someone who doesn't know Kathryn from Adam's housecat. Well, anyway, I went (begrudgingly) on a day off when I didn't feel good. I left the house, got to Children's South, got the stroller out, and then balanced Kathryn's monitor, carseat, and O2 tank at the same time to get them all in the stroller so that none of the cords tangled. Then got my purse, my coke, my keys and headed inside to find that this was not the new doc's office. So everything goes back in the car and off to where the office really is - literally down the hill. Anyway, I did NOT care for this doctor. Call me jaded because I was already upset to even be there because I have a pediatrician that I like and I don't want to change. Anyway, she gave us the referrals but also suggested a few consults that she might recommend over time. (Remember this.)

So, today was my first day back at work and it went very smoothly! It was nice to feel like I was contributing again!! Cheryl did a great job with Kathryn (as always). The day seemed amazingly easy until I got home and received a message that the new doc had called. When I returned her call, she was letting me know that she had scheduled an appointment with another new doc for a fitting for Kathryn's new helmet to correct the flat spot on her head. I was shocked - remember she said that she had some things that she may recommend over time - HELLO - next day? I told her that in no uncertain terms did I intend to get Kathryn fitted for a helmet. (I followed up with our original pediatrician and Dr. Lozano who both agreed that it is not necessary and that Kathryn has bigger fish to fry than a small flat spot!) So needless to say, I am less impressed with the new doc now, but we have to stay with her until January for Medicaid.

When Greg got home tonight, we were playing with Kathryn for a few minutes before dinner and we promise we heard the first (tiny) giggle!

Maddie had a television debut tonight. The local weatherman, James Spann, came to her school today and they showed the classes on the weather report tonight. She was so excited to have been "on TV" - they really just panned the group, but don't tell her!!


Monday, March 3, 2008

Kat's checkup at the BPD clinic

Kathryn actually made a checkup today without being in the hospital!!!!!!! What a wonderful accomplishment. Unfortunately I did not get to go because I am fighting off the flu. My temps over the weekend were up to 103 so I have been staying away from the girls. Greg took Kathryn today to the BPD clinic at Children's - remember she has bronchiopulmonary displasia (BPD) which equates to chronic lung disease. The prayer is that with time, age, and growth she will outgrow a lot of it!! Speaking of outgrowing, it is with much sadness and pleasure that I announce that all of the preemie outfits in the Ellis household have been retired. Kathryn is wearing primarily newborns now but is also wearing some 0-3 month sizes (at 7 1/2 months old!!). She is also wearing size 1 diapers now!! And her weight today showed a hefty 8 pounds, 4.35 ounces. Greg said that Dr. Lozano was extremely pleased with that. Glad to know that we are cooking well for her. There were no changes in her care from today's visit, but they said that they may be increasing a few of her meds over the next month and may try to ween from a few of the diuretics. All in all a good visit. Now if I can just get well!! I was scheduled to be back at work for the first time since December 3 tomorrow, but with this flu in me, me teeth even hurt. I begged for at least one more day.

Oh and by the way, Greg and I were finally able to enjoy a Valentine's dinner out on Saturday night at the Melting Pot. We had a great time and enjoyed some time out!!


Saturday, March 1, 2008

It's been one week and we are still at home!!

Well, we came home one week ago yesterday and Kathryn has had a great week. We have not needed to increase her oxygen at all this week and we actually could probably try weening her down, but why rock the boat!?

Wednesday of this week, I had a dentist appointment (no cavities!!) and a follow up for my surgery. Dr. Kirkland said that everything seemed fine from my surgery and that 10% of these surgeries require a follow up surgery. He said that if I still notice any discomfort by April or May, to call him back. Cheryl stayed with Kathryn on Wednesday, Thursday and Friday while I did numerous errands, grocery shopping, etc. Maddie needed new dance shoes so we got those on Thursday. Her recital is coming up in May and the pictures are today! Bless her heart, she was wearing 9 1/2's and the new ones we bought were 10 1/2's and 11's. Her poor feet!!

Two bits of great news at our house this week. Madelyn was recommended by her school to go from 3K this year to 5K next year. They think that she is ready for that class!! Also, I called Kathryn's pulmonology team and asked if we could start rice cereal because Kathryn seemed hungry. We were given the ok to try it twice daily and she has done it two times now. Last night she took almost a full tablespoon! It may not seem like much, but that's a pretty big accomplishment!!

I am currently scheduled to go back to work on Tuesday!! Please pray that all goes well with that! I have been running a fever for the last 18 hours around 101 so I am staying with Tylenol and Motrin to make sure that I get better and I have been backing away from Kathryn!