Today was a different kind of day. I actually spent most of the day at home with our four oldest children. Although we did share dinner together in the hospital cafeteria (even Haven joined us in the little red wagon that she loves), it's difficult to have meaningful conversation with your spouse when there are five children vying for your attention. Since I wasn't at the hospital until dinner time, I'm not sure what happened with Haven today. Aaron agreed to give Haven's medical update at the end of this post.
What a treat! A friend from church wanted to help us and offered to hire the ladies who clean her house come to clean ours. (Three weeks without cleaning makes a pretty dirty house, especially when the children stay home all day.) Today those wonderful ladies showed up around 8 am and flew through our house cleaning everything in sight. I just have to say that the house looks wonderful! What a blessing that was! Instead of cleaning, I spent time with my four big kids. It was fun to hang out with them, help them with school, get some hugs and kisses, cuddle my little man, and catch up on what has been happening while I've been gone. We are so thankful that some homeschooling moms help watch the kids during the days that I'm not home with them so that they can keep up with their schoolwork. It was also nice to take a quick late-afternoon nap before heading back to the hospital to trade places with Aaron.
Much is changing in our lives over this next week. Haven will be discharged from the hospital on Saturday following her therapy sessions. That means she will be able to come home for a day before transitioning to outpatient therapy and Ronald McDonald House. We are so thankful that we'll be spending the night at home as a family on Saturday. I am also thankful for our room at Ronald McDonald House (RMH). It's not the Ritz Carlton, but it will definitely meet our needs while we are here for Haven's therapy sessions during the week. I'm a little nervous about this first week ahead since it often takes me about a week to get used to a routine. There are several nice things about staying at RMH. I'm permitted to have some or all of our older kids stay the night there. Aaron and I decided that I will not attempt to have them all for the first week. Although the hospital encourages family members to participate in therapy sessions they also do not want distractions from the important work that is going on. This is not play time (well, we let Haven think that it is!) this is work. I need to focus on helping Haven get used to her new therapists, home, and schedule this week.
I took the kids to RMH tonight so they could see the facility. Kids are so great; everything is an adventure to them. They are not a bit concerned about anything but being together as a family, thank goodness! We also learned that we are permitted to turn in our keys on the weekends and go home without the threat of losing our room. This is a major praise since we were initially told that we'd lose our room if we did not report in every 24 hours. Our plan is to finish therapy on Fridays and for me to bring Haven home each weekend. Hooray! I love that we get a tiny taste of freedom each week. Four year old Levi has been having a very difficult time understanding what is happening to his family this past month, so I tried to spend much time talking with him today about this new change in our lives. As I was discussing the exciting news - that we would be having sleepovers at the RMH and he would be spending more time with me - Levi held up his little finger to shush me, interrupted my explanation and very seriously asked if there were chicken nuggets and fries at RMH. That's my little guy; he's always thinking about his tummy and chicken nuggets (his favorite food)!
Aaron here with a medical update: Haven had another exceptional day of therapy. The therapists continued to be very pleased with her aggressive progress. We praise God for this miracle!! Initially we all (parents and doctors) believed that we could be facing months or years of intense care needs for Haven. The hospital personnel scratch their heads in amazement at Haven's progress. Today she had virtually no break time during both hours of her therapy. That might not sound great until you remember that Haven could only stand for brief moments a week ago. Today she stood for about 40 minutes at a table to "play" (i.e. be distracted from her standing). Her one break was because she fell backward into my lap. Don't worry: the therapist and I had our hands right there to catch her if needed, but to give her the ability to feel the unbalance and correct for it. Imagine helping a toddler who is just starting to walk--same thing here. You need to give a safety net, but not do the work for them.
Then in PT, she sat close to Miss J. as she manipulated puzzles and toys to work fine motor skills. Then Miss J. got her dressed up and we went for a walk all around the perimeter halls of the therapy department. Haven loved it.
Speech was another success. Haven made choices, pointed, talked, etc.
Aaron here (still typing). I chose the verse for today because it makes the clear and simple point that God's blessings are like an overflowing cup. Far more than the "overflowing" "bad news" has been God's "overflowing" goodness and grace toward us. We just praise Him for His goodness and faithfulness!
Prayer request: Please pray that Haven passes her swallow study tomorrow. We're hoping and praying that we can discontinue thickening all of her liquids and blending her foods. We are at peace with whatever happens, but it will be much more work to prepare her meals if she continues to need thickened fluids and blended foods.
Also pray that we are able to gather the things we need for RMH quickly and that it would not consume our family time this Saturday.
I took the kids to RMH tonight so they could see the facility. Kids are so great; everything is an adventure to them. They are not a bit concerned about anything but being together as a family, thank goodness! We also learned that we are permitted to turn in our keys on the weekends and go home without the threat of losing our room. This is a major praise since we were initially told that we'd lose our room if we did not report in every 24 hours. Our plan is to finish therapy on Fridays and for me to bring Haven home each weekend. Hooray! I love that we get a tiny taste of freedom each week. Four year old Levi has been having a very difficult time understanding what is happening to his family this past month, so I tried to spend much time talking with him today about this new change in our lives. As I was discussing the exciting news - that we would be having sleepovers at the RMH and he would be spending more time with me - Levi held up his little finger to shush me, interrupted my explanation and very seriously asked if there were chicken nuggets and fries at RMH. That's my little guy; he's always thinking about his tummy and chicken nuggets (his favorite food)!
Aaron here with a medical update: Haven had another exceptional day of therapy. The therapists continued to be very pleased with her aggressive progress. We praise God for this miracle!! Initially we all (parents and doctors) believed that we could be facing months or years of intense care needs for Haven. The hospital personnel scratch their heads in amazement at Haven's progress. Today she had virtually no break time during both hours of her therapy. That might not sound great until you remember that Haven could only stand for brief moments a week ago. Today she stood for about 40 minutes at a table to "play" (i.e. be distracted from her standing). Her one break was because she fell backward into my lap. Don't worry: the therapist and I had our hands right there to catch her if needed, but to give her the ability to feel the unbalance and correct for it. Imagine helping a toddler who is just starting to walk--same thing here. You need to give a safety net, but not do the work for them.
Then in PT, she sat close to Miss J. as she manipulated puzzles and toys to work fine motor skills. Then Miss J. got her dressed up and we went for a walk all around the perimeter halls of the therapy department. Haven loved it.
Speech was another success. Haven made choices, pointed, talked, etc.
Aaron here (still typing). I chose the verse for today because it makes the clear and simple point that God's blessings are like an overflowing cup. Far more than the "overflowing" "bad news" has been God's "overflowing" goodness and grace toward us. We just praise Him for His goodness and faithfulness!
Prayer request: Please pray that Haven passes her swallow study tomorrow. We're hoping and praying that we can discontinue thickening all of her liquids and blending her foods. We are at peace with whatever happens, but it will be much more work to prepare her meals if she continues to need thickened fluids and blended foods.
Also pray that we are able to gather the things we need for RMH quickly and that it would not consume our family time this Saturday.
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