Posted in Noah Updates
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We have had a couple of quiet, uneventful days - what a treat! Noah is walking more and more, which is no surprise since his siblings are spending most of their time encouraging him and cheering him on. He is SOOO proud of himself, as well he should be! His nurse is going to see if GI will increase the rate of his TPN so that he has less total hours. Right now he is on 16 hours and off for 8. We hook him up at about 8 - 9 PM and he gets off at noon or 1 PM the next day. It isn't a terrible schedule, but it is hard to keep up with him while he is hooked up. He has to be restrained in some way OR have a sibling follow him everywhere while holding his pump. Again, it isn't terrible, but it would be great if we could get him rescheduled so he could get unhooked after breakfast or something. I don't know how fast they can run the TPN safely and I will be eager to hear what they say. Hannah does NOT have influenza. She was so sick yesterday that Jeff ran her in to see the express care center for a flu swab. It was negative, but the virus she does have is a nasty one that lasts up to a week. She really feels yucky and slept most of the day today, but she is VERY glad that she doesn't have influenza. It appears that Noah's IVIG was able to knock out whatever had him looking bad last week. ID had said that either the IVIG would knock "it" out or he would probably end up with something full-blown. We are thankful that he currently looks beautifully healthy. We had a lovely afternoon today. Unless Noah has a miracle and no longer needs TPN (and therefore gets his broviac removed), he will never be able to take a bubble bath or go swimming or do anything else that would get him really wet. We have to give him sponge baths or wrap his torso in plastic wrap before he takes a FAST wash in the sink or in the shower with Jeff or I. I was sad about all of the water-related fun he would miss out on, so for Christmas we got Timothy, David, Sarah, and Noah an Aquaplay set. (This is a plastic set of canals and locks that you fill with water. There are wheels to turn to create currents, along with boats and people and all sorts of other fun things.) The bigger children had a set when they were little and played with it all of the time until they loved it to death. We thought that this would give Noah a chance to play with water without really getting wet. We had such a beautiful spring day today that I couldn't resist bringing out the Aquaplay and setting it up on the front porch. It was great fun for everyone EXCEPT Noah. He was scared of it. Sigh. He finally "agreed" to sit on the porch steps with me and clutch one of the boats while watching everyone else. I don't know if he was scared of the water itself (he HATES his baths/showers) or if it was the whole "being outside" thing that upset him at the birthday party. Even though he wouldn't play with the toy, I had a great time cuddling with him out on the steps and enjoyed watching the others enjoying themselves. Maybe if he watches enough times he will get brave enough to try it. Maybe I'll get brave and set it up in the kitchen one day and see if he likes it better inside LOL. I have been delighted to see Spring springing here. Spring in South Carolina is sublime. We live in an older, established neighborhood and the yards are filled with every possible variety of flowering bulbs, bushes, and trees. Things are starting already with daffodils blooming a couple of weeks ago. Everything else is budding out and it feels like that moment in an orchestra when the conductor has stepped up, raised his hands, paused . . . and you know that any second now the most wonderful music will pour forth from all of the instruments. Creation is like that right now and I am holding my breath waiting for it to all break forth in all of its new life and splendor. You just can't possibly imagine how utterly HAPPY I am to be seeing and feeling and smelling spring instead of watching it from a hospital window. It is supposed to be in the high 60's again tomorrow and I'm planning a nice long walk with the children in the afternoon. It will be Mary Faith's first walk and I wonder what she will think of it. I'm going to close with somethings that made me laugh this week. My mom came over for lunch the other day and ordered Chinese for all of us as a treat. We were eating and my mom mentioned that Castro had retired. Hannah wanted more information so I started telling her all about Castro and Cuba. When I said, "He is really evil and he is dying," William (who obviously hadn't been listening) jumped up and cried, "Grandma Eva is dying??!!!" I explained that no, she wasn't dying - and if she were I wouldn't have mentioned it so casually LOL. At this point, Timothy (who obviously hadn't been listening) asked what we were talking about. I said we were talking about a very bad man who was dying. He stared at me for a minute and asked, "Is he the guy who shot Abraham Lincoln?" At this point I was starting to feel like I was headed for the funny farm. There was a moment of silence during which Sarah piped up loudly and seriously said, while staring at her plate of Chinese, "Very much animals have died to give us our lunch today." She then began eating with gusto. Guess she didn't want their sacrifice to be in vain LOL. David has been on a superhero kick for a few days. Yesterday we were leaving for church and I noticed he was wearing two shirts. I told him he could only wear one shirt and I reached out to take the top shirt off. He clutched it and whispered, "Mommy, if you take it off now, everyone will know my secret identity." Well, that is serious stuff so I whisked him around the corner to pull off his shirt in private. :-) The inner shirt was sporting a big paper superhero emblem that David had made and taped to his shirt. (It contained the letters SD for "Super Duper." I gently told him that we would need to take the emblem off and leave it here, and as he pulled it off I told him he couldn't take superhero stuff to church. With a resigned look he reached down the front of his pants and pulled out a full-sized red cape, two wrist bands, an SD identity card, and a mask. I nearly croaked. I have NO DOUBT that he was planning to leave his Sunday School classroom for some reason and return as the mysterious Super Duper. I almost wish I hadn't caught him LOL. Job 1:21 says, "The LORD gave, and the LORD hath taken away; blessed be the name of the LORD." God has been (and will be) faithful during our dark and rainy times just as much as He is being faithful during these days of delight. There is joy in both times but sometimes we have to look harder to find it. My life is so full of joy right now that I feel like I can't turn around without being overwhelmed by thankfulness at my richness. I must be one of the most blessed women on earth. Love, Kate |
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