Managing a Special Needs Child

Please read my previous post When Life Comes to a Stop for the full story.

I sit here in my kitchen not hungry and exhausted from the past couple of weeks. I know I need to eat, but I also need to write. This is harder than I ever thought, and yet I know that I have it so much easier than many other families.

We are home from the hospital, and my older three kids are back home from an unplanned extended stay with Grandma. I'm glad to be home, but part of me is still stuck in that hospital room. I'm up every 4 hours dealing with medical equipment to feed Baby Girl. I hate the sound of all those beeps, and Big Girl does too. Since the girls share a room, her sleep is often interrupted with feedings. I'm just thankful that the boys are sleeping through the night still. I treasure the silence much more because it means everyone is actually resting.

I'll be honest, we haven't gotten back to school since Baby Girl was admitted to the hospital. I'm trying to figure out how to fit it all in. I say "it all" but I know it will be just a shadow of what we'd been doing. I'm thankful I have such voracious readers because that gives me hope that their schooling won't be compromised. I also am continually reminding myself that walking through this time with Baby Girl is the best education they could receive. I know as they grow and ultimately enter adulthood that it will not be all sunshine and roses. How we all do during this time will prepare them more for life than any lesson they can learn from a textbook. Isn't that some of what homeschooling is all about?

I know we can't move forward without a plan. You read a few weeks ago all about our scheduling. Thankfully we had a bit of a loosey-goosey schedule going on anyway. Now I have to figure in Baby Girl's feeding schedule. She is "eating" every 4 hours, and each feeding takes approximately 45 minutes to complete.

So onto our new schedule (at least on paper)!

9:00am - The 3 big kids have free time until I get up around 9am (yes, I'm sleeping in longer due to the interrupted sleep) and call them up to get ready for the day.
10:00am - Baby Girl eats and I pump. Sometime around 10:45 we head downstairs for brunch if Dad didn't already grab them breakfast.
11:30am - Morning Routine
12:00pm - Lunch. After lunch, we do any lessons that need my direct teaching.
2:00pm - Baby Girl eats and I pump. Boys go down for a rest while Big Girl works on independent work. About 2:45, I get some quiet time. Once independent work is complete, Big Girl will quietly entertain herself.
4:00ish - When Big Boy gets up, we will work on his math & phonics, which need my direct teaching.
5:00ish - Once Baby Boy gets up, it's time to cook dinner.
6:00pm - Dinner. While the family starts eating, I am setting up another feeding with Baby Girl. Instead of pumping this time, I'll eat with the family.

Evenings are used for Baby Girl's physical therapy, any "homework" the big kids may have to finish, and any additional rest I need to grab. There are 2 more feedings overnight.

I'm new to all of this, and the new, more structured schedule is quite exhausting for me. The boys also don't do well with the new amount of non-structured time for them. I'm sure within a few days, we'll all get into a good groove, but for now I feel like a zombie.

When Life Comes to a Stop

We are now the parents of a special needs child. Fortunately our situation is most likely temporary and is something that we can manage primarily from home. That being said, every aspect of our lives are affected, and my older children have not had school in over a week. So what do you do ...

A couple of weeks ago, we went to Baby Girl's regular 9 month checkup. She's always been very small like her older siblings, but I knew something wasn't right when I only checked off 1 or 2 milestones that she'd met. The doctor took a look at things and plotted her growth. The combination of milestones not being met and a plateaued growth curve meant we were off to see a specialist.

I figured as I packed the older three for a sleepover with Grandma that we'd spend most of the day meeting with doctors to get a plan into place and return home. We got to our appointment and discovered that not only would we be meeting with a pediatrician, physical therapist, and nutritionist, but a case work with DCFS was required to meet with us as well.

After speaking with these 4 individuals and a full evaluation from the pediatrician, it was determined that Baby Girl would need to be admitted to the hospital for failure to thrive. The diagnosis didn't come as a surprise but the hospital visit did. Inside I was starting to get really worried, but I stayed calm on the outside. I have a friend who went through a similar situation with her son, so I started praying that everything would turn out just fine for us like it did in their case.

Upon arrival to the hospital, the attending physician decided that Baby Girl would need a feeding tube since she refused to take both a bottle and a sippy cup. They brought in a breast pump because nursing wouldn't count toward her feedings since they could not measure output. I met with a lactation consultant.

Over the next couple of days we met with even more doctors and child development professionals. A physical therapist came in to work on low muscle tone and physical milestones. She recommended a Bumbo, and my husband quickly found one on Craigslist just a few blocks away for $15. An occupational therapist worked on spoon feeding. She noted that Baby Girl had a high palate, so she brought down cups used with cleft palate cases. We started to have some luck on drinking! Traditional sippy cups were now to be used for teething and play. The hospital's nutritionist came in a get a game plan for feedings both through the tube and with adding in solids. We had to meet a total of 500 calories per day, and breastfeeding, drinking from a cup, and solids would not count towards that total.

They were all amazed at how calm my husband and I were through the whole thing. I didn't feel calm much of the time, but I knew that God was in control. I knew He had already brought us through many things with Baby Girl. He would see us through this as well.

As the days continued on, we carefully watched her weight. We were told that Baby Girl needed 3 consecutive days of weight gain before the doctors would consider releasing her. After 4 days in the hospital, we finally had 2 days of weight gain. All we needed was for Monday to show another increase.

Monday came, and everything seemed to fall apart. First was that overnight, we had to pull her IV because it had started to leak. Then she had to skip a feeding for a MRI that had been scheduled. The MRI team determined that they could not sedate her for fear that her airway would close due to the low muscle tone. They say to go ahead and feed her. Then keep her awake until the MRI (about an hour away). If they could get her to sleep through it, we wouldn't have to put her fully under. We went ahead and fed her, and when we noticed drowsiness, we started with slightly more vigorous play. It was too much, and she threw up at least half of what she had eaten. She did sleep through the MRI, which was great, but her weigh in shortly after showed a weight loss. Our hearts sank.

The doctor acknowledge that all of the variable from the day - missing IV, skipped feeding, and vomiting the next - most likely was the cause of the weight loss. If we could have a gain the following day, they would not start the count all over again. We continued with the feeding plan, lab work, physical therapy, etc. as scheduled and prayed for good results the next day.

During this time, we also learned that Baby Girl would be going home with the feeding tube. I had to learned how to run the pump to feed her along with changing the feeding tube itself. I hated making her scream and cry, but I knew it was crucial to her survival.

Tuesday weigh in had arrived. I held my breath praying that her weight would be up. The nurse set up the scale while I stripped Baby Girl down. I couldn't look. When the nurse wrote the weight on the board, I nearly cried. Not only was she up from her weight loss day, but she was well over her previous gain! Praise the Lord!

The doctor came in and let us know that she was getting to work on discharge papers. I just had one more training to do that evening and sign rental agreements for medical supplies to use at home. I ordered lunch and set up Baby Girl for a feeding. Then we both crashed from exhaustion.