More good days than bad days
A lot has happened since our last blog post. We moved from our tiny 400sqft cottage to a whopping 780sqft house. It’s nearly double what we were living in and we are super excited about all the extra space we have. Adam has done an incredible job of renovating the house from the ground up and we are so grateful to have a place to call home.
After 3 weeks of Lovenox shots Maliyah’s 5 blood clots thankfully cleared up! This made it so that we were able to have surgery on October 6 to have a broviac central line placed. Although it was what was considered a minor surgery I was still apprehensive about how Maliyah would react to anesthesia, especially her digestive system. Thankfully all went well and we were able to fly back the same day of surgery!
Right after we got back from the hospital in August our days were filled with a lot of medical care of Maliyah. We were administering IV antibiotics 3 times a day, oral antibiotics 4 times a day, lovenox shots twice a day, on top of the regular 12 hours of TPN hook up at night. Lately we have been able to scale back to just the oral antibiotics 4 times a day and 11 hours of TPN at night. It feels like our lives are getting back into the swing of things and it seems like we have been having a lot more good days versus bad days. Maliyah hasn’t gotten bloated for about 4 weeks and has finally reached 21 pounds! She has also been able to eat a larger variety of food, which makes for a very happy little girl and an even happier Mommy.
I read something a few weeks ago that parenting a special needs child has it’s incredibly challenging moments but it makes the “ordinary” moments extraordinary. The lows are lower but the highs are also higher. A few points in this journey we thought that we were going to lose Maliyah. These were incredibly hard times. But because of this we’ve celebrated every milestone and victory that much more. The “little” victory’s of being able to eat one more type of food, to being able to have a bowel movement on her own, to every ounce gained, to blood clots being cleared, to one more day of not being bloated are all things we are so thankful for. While most every one else considers these things ordinary it is extraordinary for us. Every night when we say our prayers we thank God for one more good day.
