Blessed
I’ve been meaning to post for a while now, but with Thanksgiving, Christmas and New Year’s done, I feel like we just now have started to get back into the swing of things. The last few months have been filled with so many blessings, I hope that I can relay them all to you.
Maliyah is now just a little over 2 and a half and I have to say that this age is one of my favorites stages so far (although I think I say this at every stage). She is talking up a storm and has an opinion about everything. We spend many of our days chasing butterflies, going to the playground, playing at the beach and meeting up with friends. Her energy levels have increased and she is constantly on the run. She loves spending time with her friends and is such a social butterfly. We have many sweet moments where she will spontaneously give a kiss, hug, or say “I love you”. I wish I could save every flower she picked for me and box up and save all the happy moments.
Ever since Maliyah’s hospitalization in August things have settled down and we feel like we are living life again. We’ve had almost 5 months without any infections, blood clots, or bloating episodes! Back in November, we slowly started introducing some of the foods Maliyah reacted to a year ago. I’m so happy to let you know that she is now able to eat rice, potatoes, and corn. This has been a game changer in the variety of foods that she can eat. Once we started these foods, Maliyah started gaining weight very quickly. Back in March her weight had dropped down to 14 lbs 8 oz, she is now almost 10 pounds higher than that at just over 24 pounds. She is now officially on the growth chart for the first time in a long time!
We’ve started to wean her down from her TPN but it is a very slow process. It is easy to get anxious and want to accelerate the process. We don’t know how long Maliyah will be on TPN or if we will ever get off of it. That being said, it has been a life saver - literally speaking. I know that we wouldn’t be enjoying the precious moments we are experiencing right now if it wasn’t for the advances medicine has made in this area. Thankfully, I found a way to waterproof her broviac site using Cathdry dressings. She has now been able to enjoy the beach to the fullest extent.
If you remember back in August, Maliyah had 5 very large blood clots in her upper chest and arms. We did 3 months of blood thinner injections (morning and evening), and thankfully those had all cleared up. We were a little nervous about whether or not she would develop more clots once she had her broviac placed back in October but, thankfully after a followup echocardiogram in November, we had confirmation that no more blood clots had developed. This meant that we did not have to do any more injections! I think all of us were relieved that we did not have to continue with the trauma of injections every morning and evening.
We have also figured out a medication regime that seems to optimally works for Maliyah. Around this time last year, Maliyah was having more and more severe bloating episodes. It seemed like every few days she would get so bloated that she would just lay in bed all day and sleep and not eat. It seemed like every other day we we were eliminating another food that she would react to. I finally posted on an MMIHS support group asking for help, and there was one person on there that suggested that it sounded like bacteria overgrowth in the small intestine due to slower motility and antibiotic use. This all made sense because Maliyah has slower intestinal motility and had a couple of UTI’s that required antibiotics. This I believe wiped out the good bacteria in her gut and made the bad bacteria proliferate. Thankfully, after a few trial and errors, we now have her on some good medications to control her bloating.
The last year has definitely been challenging but I am also so thankful to God for leading and guiding us every step of the way. I truly believe that He gave us the wisdom and determination to find a solution to the problems that faced us. As I look back at the past 2 and a half years, I see time and time again of God’s faithfulness in our lives. We don’t know what the future holds, but for now, we are enjoying every moment we are given.
