I know that it has been awhile since I last posted however things seem less dramatic now that we are home. Obviously we aren't doing CT's and test and surgeries everyday. However, it doesn't mean that things aren't a little crazy at times. Kaidence is getting better at eating it seems. She really likes the berry banana baby food. We tried a bath in the sink because she still has that line in her chest that can't get wet. She smells much better. I was surprised last night when I bent down to kiss her toes and they smelt like stinky cheese. Pretty bad for a kid that doesn't wear shoes. Obviously, the sponge bathes we have to give her aren't cutting it. No matter how hard we try I don't think it's as good as hosing her down with a good lather. I think that we have more teeth on our way in. One of the medications she takes makes her gums thick and so she will have a harder time teething, but that's ok. Teeth are nothing compared to what she has already done in life. One thing that I am finding with Kaidence is that she is maybe too content? She is ok with laying down on her back and playing all day long. Well, that is what she has done for half of her life. I am really trying to work with her on sitting. She also wants nothing to do with bearing any weight on her legs. We can't work with her too much until her chest has the full 6 weeks for the bone to heal. I am worried about these things and we do have Early Intervention coming out to work with Kaidence and evaluate her on the 4th of February. I feel like I am spread a little thin trying to make sure that the everyday things get done, each kid feels loved and their tummy full and then working with them on all of their little individual needs. However, it is so much better than trying to do it all from a hospital room. Mike is starting school again the first week in February and that will be interesting, but that is life. We are very happy that things are going so well. Kaidence's appt. went well also and we are still playing with her meds because some of the blood levels are not where they should be. Things are looking good with our family and I am looking forward to spring and getting out in my yard again. I think that I will have a lot to do this year, things were rightfully neglected last year. I am excited to go into a time of year with a fresh start, rebirth. I had such a hard time this fall when Kaidence was getting sicker and everywhere I looked around everything was dying for winter. It just felt so hopeless. Thank Heaven for new beginnings!
Danny's Birthday
4 weeks ago
5 comments:
Yes, Thank Heaven for new beginnings! We are happy that things are going alright...and I am sure in time Kaidence will be sitting, crawling...and soon enough walking!! But it is still hard when you know you had a perfectly normal child that because of big time medical issues has to re-learn things and do things later than they normally would have, but at the same time I know we would do whatever it took to have our children still here with us. Which you have done. We both know life isn't easy or fair...dang it! I admire your courage and strength. You are such a great mommy.
We love you guys!!
Alyvia's family
I feel the same way. But it wonderful that spring will be here soon. Kaidence will just start to bud out and bloom like the plants do. You figure with all she has been through it's as though she has been in hibernation the last 6 months, but a very trying and painful one. Spring always brings a newness to everything. I have always been amazed at the miracle of nature. Everything goes into its hibernation stage, and then like our Savior did, it all comes back to life again.
Mike and Shaunatelle remember to take time for yourself and fill your cup. I can't believe how many people have followed your amazing story. You are definitely doing a lot of Missionary work. We love you all and continue to pray for you. Love Aunt Deb and Family
Our continued love and prayers. We are so proud of McCaden and Camden for what they have done to deal with this time in all your lives. I just can't help but think of all those whose lives have been blessed because of you. We love you and all your family.
Wendy & Sar
From 1 heart family to another! The Milestones will be reached. Our Jackson is 7 months post transplant and 8 months old. He is still lagging a little behind on Rolling over and sitting up, but with patience and perseverence we are taking care of business. God gave a heart, which also gave us the time to work on those things. If you ever have any questions, or you want to vent your worries, just look at Jacksons website. our info is there!
www.caringbridge.org/visit/jacksongeorge
Ju-Ju and prayers
We are so happy for Kaidence. She is looking so good. The therapist will do wonders with Kaidence and before you know it she will be sitting, crawling etc.. Mikayla had to learn to walk, eat, sit up, hold up her head, etc again, (but she had a stroke while on the BIVADS at LDS) remember you saw her at the PICU when we were neighbors.
Miracles have happened for both our girls. They are meant to do great things here on this Earth, that is why Kaidence was the first on the Berlin Heart and Mikayla was the first child here on the Thoratec BIVADS (total artifical heart). Like someone else said on here Kaidence will just start to bud out and bloom like the plants do.
You and Mike have been so strong through this whole traumatic ordeal. Same with the boys. Your faith is strong and that will help you in the months, and years to come.
You and Mike need to remember to take time out to be with each other now. Since Kaidence is doing well, have those date nights again with just the two of you. Enjoy it.
I hope we run into you during transplant clinic on Thursdays sometime.
Mikaylas rejection is doing much better now. She had a biopsy last Friday and things are finally looking better, only 2 out of the 3 pieces taken had minor rejection. Slowly but surely it is getting better. Sure did take a long time for it to get better though, I guess cuz hers was so bad.
You are always in my prayers.
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