This last month has been rough for me. Maci will no longer sleep at night. She wants to party and play all night long until about 3 am and I am not able to lay her down in bed any earlier than 5 am! Until that time, she and I (along with her lovie, Ella) are camped out in the recliner in her bedroom. Nothing seems to help her go to bed sooner or easier; I've tried everything possible. Music, pillows, different sized pillows, TV, nature sounds, overhead light on, overhead light off, night light, low light lamp, different positions in the bed.....nothing works. She plays from around 9-10, naps, plays from 10:30 to midnight or 12:30, naps again and back up at 1 am, plays for about an hour and then is back to sleep. I try to put her down at 3 am and nooooooo way it lasts. So it's back in my lap until around 5 or 6 am. It's exhausing for me. I've been thin on patience and have felt so guilty for being frustrated. It's not Maci's fault and I don't take it out on her but there are times when I have to lay her down, let her cry a minute and then leave the room to cry myself. I have NEVER been so tired in my life as I have been in the last month. Her being a night owl doesn't seem to be related to dialysis or anything I can pin point. It just started a bit over a month ago when she got a cold and had a stuffy nose. She couldn't breathe well laying down, cried and so I held her. I guess those 8 days of having a cold started a trend....that won't end.
This is a lot of the reason I haven't updated the blog before now. I haven't felt like doing much of anything. **sad face**
So, in summary Maci is doing well. She's had her first set of sniffles, has began feeding therapy (this is week 5) and is eating 7-10 bites of baby food. She will also eat yogurt melts and just last night took 1 mL of water from a syringe (a little at a time) and drank it, WITHOUT gagging. Small victory!
As of last night she weighs 19.22 lbs. Less than 3 lbs to go!!!!!!! I am so proud of her. We are thinking she will hit the magic 22 lbs around Christmas. WHAT a present that will be to know that just at the start of a new year, we can start the transplant process. HOLY COW it is starting to seem REAL. I still cry every. single. day. I am still heartbroken for all that Maci experiences every day. I would NOT wish this life on my worst enemy. It's hard....very hard. I NEVER want anyone to think that I am complaining when I share my ups, downs and challenges. I am simply sharing my story, Maci's story. I want a record of this incase Maci ever wants to know what her first year was like. This way I will have it documented; the good, the bad and the crappy.
I've started planning her first birthday party. THAT brings tears. Tears of joy. To think back to being in the NICU at Methodist Germantown and remember Dr. D tell Rick and myself about dialysis and when asked about long term prognosis he telling us about transplant at a year/22 lbs "IF" we get there. IF WE GET THERE. I recall him saying it was going to be a long, hard road and he wasn't lying. BUT, it's a road we continue to travel!! Maci is truly my lil hero and inspires me every. single. day. I won't dare mention the number of people on the First Birthday invite list. To me, Maci's first birthday isn't about cake or gifts....it's all about celebrating her LIFE, her last 12 months of endurance and growth and her awesomeness. That's what I want the day to be about....or at least the couple of hours we spend with friends and family, her progress and the fact that I AM SO BLESSED with her and by her. I need to check to see if I still have waterproof mascara for that day!
She is jabbering more and more. She has said MahMah twice but I don't think it's on purpose....yet. She has also started using more constanants like B and G. She isn't sitting up yet, still not rolling over but her head control is a lot better, her core strength is better and I think she could roll over but doesn't want to. Remember she has her dialysis catheter and her feeding button/tube so it can't be comfortable for her on her belly, on the floor. If she is laying on something padded, like a stuffed animal or a pillow, she will happily spend time on her tummy but not a hard surface.
Her vision is still a concern as she will still not focus for any length of time. We go back to the Opthamologist at the beginning of November. I did call to give them an update and ask if we should come in sooner and they wanted to keep the November appointment as they feel that the 6 month follow up from our last appointment is best since things can change in the next two months. I am literally a basket case over the thought of her having vision issues. If she needs to wear glasses, no problem. I can definately deal with that.....anything worse, well I don't want to think about the other possibilities. I'll have to be medicated if we get disappointing news in November.
I am going to participate in the 8th annual Le Bonheur Pumplin Run on Saturday, October 13th. I don't have to explain how much this hospital means to me. If you know me, then you should KNOW that
I 
17 weeks and 5 days in the Le Bonheur NICU and 5 months of doctor follow ups and Maci remaining a patient through the Dialysis Unit....yea, part of my heart is still at this hospital.
I have started a team, please join us if you would. Our team name of course, Maci Moo's Kidney Krew. Should you wish to make a donation of ANY amount....even $1 will add up, you can do so here:
http://www.pumpkinrun.org/faf/donorReg/donorPledge.asp?ievent=1024340&lis=1&kntae1024340=09FFD1188FEF430DB7F2935527F35797&supId=366844882&team=0&nmv=true
Another way for the state of MS residents to support Le Bonheur....
Mississippi residents can now preorder a Le Bonheur Children's Hospital specialty license plate. To put the plate into production, they need 300 orders by October 15!!! The cost is $31 and approximately $24 of that will be donated to Le Bonheur. The Le Bonheur Foundation will notify you by mail when your plate is ready. The county tax collector’s offices in your county will have a list, provided by the tax commission, of people who have already paid their fees and are entitled to one of these first 300 tags.
Download the order form: http://bit.ly/QgEx0W
Here is what they look like.
I learned at our last clinic visit that Dr. Matthew Eison, Maci's "primary" Nephrologist will be leaving Le Bonheur to return to his home town in SC. I sure hope that hospital appreciates him as much as I have over these last 10 months! I am still all weepy thinking about it. Oh how I do love all the Nephrologists on staff at LB but I guess since Dr. Eison was the Peritoneal Dialysis Clinic doc we saw each month since being discharged, that along with other factors, he just kinda moved right to the top of my favorite people list. He took care of MY baby and I will forever be grateful. He took time to EXPLAIN things and answer my questions while Maci was in the NICU and there after. I never felt rushed or made to feel like any question I had was insignificant. Maci's Aunt Pamcake has made her two shirts that say "I Love My Nephrologist" and it's because WE DO! I put her shirt on her for our September Clinic visit on 9-11-12. How ironic that it was our last clinic day with Dr. Eison.
Dr. Eison will undoubtedly be missed. SC is getting an awesome physician and had better appreciate it or I would hate to have to go open up a can of MS butt stompin. Im very happy that he's getting the opportunity to go back "home" but he's leaving my home. Both he and his wife are precious people and I wish them safe travels and happiness in SC. I'm thankful to have met Dr. Eison and to have had him take care of Maci for the time he was here. He worked some long and odd hours and I can't imagine the sacrifices made by him or his wife. I thank his wife Laura for allowing her husband to be such a dedicated doctor. I consider it a blessing and privilege for Maci to have been in his care. :)
I am going to attempt to make a better effort at updating. No promises....it's basically up to Maci. LOL
Maci loves to be outside so I think that is where we are headed right now for a little break from indoors. Until my next update, please keep praying for continued weight gain, progress and for improvements in eye sight focus. Your prayers and concern are as always MOOch appreciated.
We did come outside and this is what happens to Maci outdoors. That's her MP3 player with her tunes goin in the background and her yogurt melts on the left.
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