Today marks the beginning of the last week in 2010 and I have to be honest that I am so excited for this year to be over. It has been a year of such extreme highs and lows, often in the same day. I have never experienced anything quite like 2010. The first two weeks we were anxious for both the news of Reagan's bloodwork for Rett Syndrome and our second born baby girl. As luck would have it, both of those things would come within 24 hours of each other and be the start of a year where I did not know whether to cry with overwhelming sadness that my oldest daughter has Rett Syndrome or laugh with delight over our new bundle of joy.
Throughout the 350 days that were left in 2010 I learned to cope as best as I could. I cried when I needed to, laughed as much as I could, and relied on my friends and family to give me the strength and courage to face each day. Speaking of friends, I have made some wonderful new friends that I have no doubt will be part of my life forever. I have also lost touch with some good friends and reconnected with some old friends. I have witnessed first hand the compassion and caring as loved ones, friends and strangers gave generously to the numerous Rett Syndrome fundraisers. I have had the luck of having great therapists for Reagan that first entered our house with little to no familiarity with Rett Syndrome but quickly learned from Reagan and other sources to become her biggest advocates as well as dear friends.
I have watched as Reagan slowly lost skills such as using her hands in a functional way so that she can no longer feed herself while her baby sister sits in a high chair next to her and masters the pincher grasp to put small morsels of food in her own mouth. Again, just a mix of emotions. I have held my girls tight as the news of yet another child with Rett Syndrome has passed away. I have asked for a miracle so that no other family has to endure the pain of hearing the diagnosis or bear the thought of losing their baby too early.
I am not foolish enough to believe that 2011 will not be a year of ups and downs. I know it is all just part of life. But, I am hoping for a year of less pain and more laughs. One that brings a balanced level of both acceptance and perseverance in coping with Rett Syndrome. Let the countdown for the New Year begin!
We have good news to report from our visit to Rett Specialists....there is NO news! There is nothing major to report, which I find to be great. The neurologist was pleased with Reagan's eye contact, interaction, and energy level. He was less than pleased by her efforts to lick everything in sight, including him. But, thankfully all of his clients are Rett patients so he understands that it's just part of the deal. We still are not experiencing any seizures, breath holding or anxiety so there were no new medications to add. He was also happy with her height (75-90th percentile) and weight (25-50th percentile) growth! But, her GI Dr was not as impressed. She was glad to see that Reagan had gained 2 pounds but as expected, she wants to see more weight gain. The new goal is 1/2 pound every month and a request to return in 3 months for a check-up. We also changed up some of her GI medicine and are hoping to start decreasing her reflux medicine after the 3 month visit.
We continued our travels on to Louisiana to spend several days with my family for an early Christmas celebration. It was great to see my parents and extended family and both girls got spoiled rotten, in a good way of course! Reagan got a new toddler recliner from MawMaw and PawPaw and absolutely LOVES it (thanks to Ms. Abby for sharing the idea!). She goes non-stop if she is standing and slides out of all the chairs that we put her in so that she can have a rest. This recliner is perfect because she doesn't slide out of it and it is her own little place to relax while she watches her favorite tv show.
We are looking forward to relaxing over the next several days and spending a lot of quality time with each other with no traveling. We hope all of you have a great holiday!
No matter how much we sit her in the recliner straight, she prefers to lay across it, using the armrest as a pillow...silly girl!
This week we'll be making our semi-annual trip to the Blue Bird Rett Clinic in Houston to visit Reagan's Rett Specialists (Neurologist and Gastrointestinal Physician). Our last trip to these specialist was in April and it was also our first visit, haven only been new to Rett Syndrome for 3 months. I have learned so much about Rett Syndrome since that visit, from both our experiences and the advice and wisdom of my wonderful Rett family. I am really looking forward to talking with these specialists once again and hopefully hearing some first hand information about our CURE!
The only part of the visit that I am not looking forward to as much would be the weight check part. I don't know one Rett family that does not struggle with getting their child to gain weight, no matter the severity in which they suffer with Rett. It is such a dreadful conversation to have with the Doctor, talks of optional feeding measurements such as a feeding tube. I know that I want to do everything possible to prevent Reagan from needing to go this route, yet everyone that has had the procedure done for their child has only one regret, not doing it sooner. So, it sounds like my decision is not logical at all, but completely emotional.
Reagan has gained 2 pounds since April, which seems close to the 3 pounds requested so I am hoping the Doctor will be somewhat satisfied. I am happy enough with her weight gain especially knowing now that she had mono for the past few months and one of the symptoms is a decrease in appetite...just great! But trust me, the slow weight gain is not because of our lack of trying. I have tried to take some of the guilt off of my shoulders for her not eating, thanks to her Nutritionist's advice. I can not force her to eat. I can only provide the opportunities and best foods and the choice is hers. So, I will do my best to take the possibly scrutiny of her weight in stride!
It started off a couple of weeks ago with Reagan's first optometrist appointment. Her left eye started crossing in more frequently and I had put off the inevitable long enough. I'll add this visit to my top least favorite doctor visits because having to hold your daughter down so she can have eye drops to dilate her eyes for the exam is not a lot of fun...poor Reagan. Survey says, Reagan is farsighted and needs glasses. I'll post pictures below of how stinkin' cute she is with her new pink spectacles.
We followed that up with a visit to her Pediatrician. She has been lethargic and exhausted almost all.the.time for the past couple of months. I called her Rett neurologist about 6 weeks ago and they ruled out any Rett related causes but mentioned that she doesn't seem to be taking in enough fluids so we should visit her Pediatrician to see about dehydration. We did and that was crossed off the list and we thought she was just going through a growth spurt. Fast forward to last week and I am more concerned because the lethargy is not going away and I can't believe that this is normal for an almost 3 year old to be too tired to do anything. So, back to the Pediatrician's office and 5 days later the blood work confirms Reagan has (or had) mono! She is on the other side of it and is not contagious, but the lethargy will continue (for weeks or possibly months) as her little body tries to recover. The only thing we can do is provide her with plenty of fluids and rest.
We also received a trial communication device with eye gaze (ECO2) from PRC last week to test out and confirm that this talker is as great as we think...but that's a separate post!
And lastly, this week Reagan had her first dentist appointment. This is probably the appointment that I was dreading the most because I thought it would be a bad experience with the dentist forcing her to keep her mouth open while they examined and cleaned her teeth. I am glad that I was wrong, it was the BEST visit to a Pediatric Doctor ever, and we've seen our fair share of Pediatric Doctors! As luck would have it, I came across the name of a Special needs dentist who recently started seeing patients at the Dell Children's Medical Center...so thankful for Google and the recent article our local station did on Dr. Lisa Jacob. Dr. Jacob was so kind and gentle that Reagan was calm enough to gladly show her teeth! It was awesome, no screaming or crying, just smiles and a Tinkerbell sticker at the end! And as a special treat for being such a brave girl, she got a vanilla milkshake on the way home, oh wait, that's part of her regular diet to get her to gain some weight. Oh well, she still enjoyed it!
She was not very enthusiastic about wearing her glasses and even less enthused with me taking her picture, so this is the best I have for now:
Today the Rett families are mourning the loss of another child who lost their battle to this monster. Sweet little Aidan was only 3 years old. This is the second Rett child lost in the last couple of weeks and our hearts are all very heavy and sad today.
I got the news of the first loss the weekend after Thanksgiving and I have been holding my breath ever since. I have only been part of the Rett community since Reagan's diagnosis in January but it seems to me that the passings always happen in clusters. I was hoping this time would be different. The news has stopped me in my tracks, made me hold my little ones longer. It puts that doubt in my mind again about Reagan's health, questioning how long we have before this horrific disorder causes major complications. My heart goes out to both of these families.
Today's adventure was clearly for my amusement since I am almost certain that neither one of my daughter's could care less about seeing Santa. But, I am completely convinced that their memories from this age will be mostly from their pictures that I have neatly arranged in their photo albums, creating a story for them of their little lives.
They will see the pictures of them sitting on Santa's lap and they won't remember how I panicked when I realized that Reagan's new Christmas dress was about 3 inches too short. Or the patience that it took to spend another 10 minutes putting a new dress on her limp and uncooperative body. They won't remember how anxiously Mommy paced around while we waited in line (thankfully only for 15 minutes!), fearful that this will all blow up in her face. They won't remember how I gritted my teeth as I felt the woman behind me try not to continuously glance at my 2 1/2 year old daughter who would randomly scream sounds that someone her age wouldn't typically make. Or the way that my voice quivered when I tried to explain to Santa that my daughter has a neurological disorder called Rett Syndrome and she can't respond to his question about what she wants from Santa this year. Or how kind he was to try to reassure me, telling me that his 10 year old grandson is autistic. Nope, all they will remember is what they see from these pictures. Two precious little girls dressed up to see Santa, and that's all that matters.
Although neither are smiling, I consider it a great victory that there was no crying or screaming!
Hi and welcome to our family blog! We have a 4 year old daughter, Reagan, who has Rett Syndrome and a 2 year old daughter, Lauren. This blog is to help others understand Rett Syndrome and to share our journey.