ECI brought us a loaner bath chair until the one we ordered arrives. Kendall loves it! She outgrew her other bath chair quite a while ago, so we are thrilled to have this one. Bath time has always been Kendall's favorite thing. She loves to splash and the water really relaxes her. We plan on swimming a lot this summer. She has no choice in this family. We were all water babies...everyone on my side of the family at least. Justin grew up swimming in a creek. One with muddy water and fish and even snakes!?? ugh! No thank you!
Unfortunately, Kendall's cough has progressively gotten worse. On Saturday she was very cranky and wouldn't eat anything. Giving her her medicine is becoming harder and harder. She has started throwing up after every dose. Then, I don't know what to do, because I don't know how much actually went down. Her Keppra gags her and then she throws it up...and the cycle continues. There has to be a better way. We spend close to 2 hours in the morning and 2 hours in the evening each day trying to administer the Topamax, Keppra, B6, Aspirin, and Folic Acid. When she's not feeling well, its even worse. This morning, I ended up putting her in the bath to get her to eat again. Hey, you do what ya gotta do sometimes, right?
Anyway, her eye muscle surgery is scheduled for May 6th. I called to schedule that appointment and ended up with 4 others. We have to go back to the PO because it will have been longer than 6 weeks since we saw him last. Then, we have to go to the hospital for a pre-op since Kendall's diagnosis is so extensive...then the surgery, then the follow up. I really do need to invest in an apartment closer to the hospital....
Speaking of downtown, we went there today for the Ft. Worth Art's festival. We saw the world's largest string instrument. The band that played it was very eccentric, but Kamden enjoyed it. Kendall seemed to enjoy being outside and out of the house. Downtown Ft. Worth is one of my most favorite places. Justin and I had our first date at a wine bar on Main Street. I have a ton of memories down there. I love 8.0's patio in the spring and summer for Texas Country concerts! And I absolutely love the Christmas lights in the winter. It is so safe and easy to navigate. And parking is free! I'm so totally a Ft. Worth girl and not a Dallas girl. We had to laugh today though, since there are so many new restaurants, apartments, and bars. It totally proves how our lives have changed since Kendall's birth. We didn't even know some of those places existed. Hopefully we will have a chance to go on a date soon....(hint hint...Justin....my birthday is right around the corner.)
And speaking of birthdays...Kendall will be 1 in a week. Gosh, seems like just yesterday OK, maybe not. Actually this has been the longest most stressful year of my life! But, I think we've done OK.
Posts
4 comments:
I think you are doing fabulous.
Mixing Jude's medications with only 1 oz of falvored pedialyte seems to help. The doctor's scolded us telling us he will refuse his formula if we mix his meds with a bottle, but he hasn't yet. Our pediatrician said to do what we needed to, and praised our creation. Is this an option?? Jude sucks down his "yum yums" as we call them quickly without hesitation.
I also love Ft Worth. Maybe some night we can both get respid and go on a double date. I think this goes a long with "I will show you my ECI calendar if you show me yours" lol!
She is just so stinkin' sweet!! Hearing Uncle Coy talk about her is one of the sweetest things in this world (and you are pretty high up on his list, too)!! Love you guys!!
So sweet, I am making you some yummies as I type, I will bring them by tonight....Hope Kendall like them.....
If you or your loved one is of larger stature and you require a bariatric bathtub lift or hoist, be sure the model you select is meant for someone of your size.
Post a Comment