Posted in Noah Updates
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A lot has happened since my last update, so be prepared for a long post! Jeff got home safe and sound from his business trip, but unfortunately he came home with a really nasty bug of some kind – sore throat, high fever, cough, and utter exhaustion. He has always been good about sharing (snort) so Hannah, Sarah, Noah, and I are also feeling pretty yucky. This is the first day that I have felt up to writing on the blog. Of course, we always are a little extra concerned when Noah gets sick since he tends to get worse very quickly. So far it is clear that he feels rotten and he is extremely peevish and fretful (SO unlike him!!), but it doesn’t seem to be serious. Let’s pray that it stays that way!! Even though Jeff felt so sick, he spent all of Saturday morning and most of the afternoon out in the Later that afternoon, David had his 7th birthday party. It was a pirate theme party and everyone had a great time. We actually found some very cute pirate stuff that wasn’t scary looking and wasn’t tied to any pirate movies. When the guests came, we played “pass the black spot” which was like hot potato. They just passed a black paper circle while music played and whoever was holding it when the music stopped was out. When someone was out, everyone else yelled “to the pirate dungeon!” and the person who was out had to go to the other side of the room. They absolutely loved this game and we had to play it more than once. Then we had a test of pirate skill. First, each child had to perform a “cannon crush” by stomping and popping one of the air pillows we use for shipping. Then they had to take a “croc walk.” We printed a bunch of crocodiles from our computer and taped them all over the floor, then taped blue paper “stones” between them. The guests had to walk stepping only on the stones. If they landed on a croc they had to start over. Some of them loved having to start over (Sarah in particular) and would make a point of messing up right at the end LOL. Next they had a “battle challenge.” I painted a pirate ship on the side of a big box and cut out around it. They had to throw plastic blocks into the box through the cut-outs. (Like a bean bag toss). Finally, they had to “walk the plank” that Jeff had set up over our wading pool. As they finished that, Matthew “just happened to find” a mysterious rolled up scroll. Jeff and I had created a treasure hunt and printed all of the clues on parchment using Black Adder font and a treasure chest clipart. Hannah had the good idea for me to burn the edges of the papers and I rolled the clues up and tied them with scrap leather lacing from our business. The clues led the children all over the place. When they approached the last clue, the Bad Pirate appeared and snatched it from them. It was Jeff with an earring (and he also put in a nose ring of all things!) and an eye patch, hook, and inflatable sword. The children went nuts chasing him all over the place, especially when he ran past a huge tub of water balloons! I DID take lots of pictures and am going to try to get them up ASAP. Jeff the Bad Pirate really has to be seen to be believed! The poor guy was bombarded by water balloons until one of the boys finally managed to get the clue away from him. The clue led to a cardboard treasure chest containing the favor bags. A piñata, cake and ice cream, and presents ended the party. David and his friends had a great time playing with some of his new toys while I got to visit with some of the moms. We had a real treat on Sunday. We have some dear friends who have been serving on the mission field in the Wednesday is Noah’s big important appointment. We have a world class genetics center here in little old While we are seeing some benefits of the nutrition, like excellent weight gain, most of Noah’s other symptoms have remained the same. Some are worse. He is 10.5 months now. He is just starting to sit unassisted for a couple of minutes at a time. He can’t stay awake for more than about an hour unless we work at keeping him busy and distracted. He can’t roll over or creep or do anything like that. While he does have purposeful movement like reaching for toys, he has been doing an increasing amount of non-purposeful movements also. He will stiffen his arms and legs while rotating his feet and hands almost frantically. He will do this for fairly long periods of time. If a toy is out of reach, he may fuss and may swat toward it a few times, but won’t really try to get it. He is not as engaged with his toys as I would expect. He will chew them or turn them around in his hands, but other times he will swing his arm frantically until the toy flies out of his hand. He certainly can’t do any goal oriented play like stacking things or pushing buttons to make things pop up. He is fed through a feeding tube 24 hours a day at a very slow rate. He cannot tolerate being fed in a more normal way where he would receive several ounces at scheduled mealtimes throughout the day. He does nurse (loves to nurse!) but cannot or will not take anything else by mouth. He is loving and happy almost all of the time. He laughs and smiles and usually kisses us if we ask him to. He is alert and curious. Almost everyone he meets becomes his new best friend, and he has never been fearful or resentful towards the doctors and nurses who have had to hurt him so many times. I don’t say all of that to sound critical or complaining about Noah, and I sincerely hope it didn’t come across that way. It is just that this blog has a lot of relatively new readers and we are getting lots of emails asking about Noah’s condition, so I thought it was time to sort of recap how he is doing. All weekend the song “Showers of Blessings” has been running through my head, as we have been truly showered with blessings over the last few days. Here are just a few! 1. We are so thankful that God provided a path for Jeff to work on our van. It isn’t easy being without it right now, but the first, most important repairs needed to make it drivable are being handled by Jeff and our friend Bobby. That is such a huge blessing! We will have to evaluate later whether we should get the remainder of the repair work done or if we should be looking for another van (this is a 1995 15 passenger van), but this is buying us time to think and pray rather than making a hasty decision. 2. David had a wonderful time at his birthday party! I know this seems like a minor thing, but when you are seven years old it is a pretty big deal. We have missed so many normal daily things lately and a birthday party was just what we all needed. 3. My utterly incredible husband is one of the biggest blessings in my life. He is a real servant and I was blown away by his cheerfulness as he worked on the van (he HATES the heat) and then participated in the party even when he was feeling so terrible and sick. I would have been in bed with a “do not disturb” sign on the door if I had felt like that! 4. God has been faithfully smoothing the way for us even without our van. Each time I have needed to go somewhere, the provision has been right at hand. 5. While Sarah did have another slightly scary reaction to her latest rabies shot, it was considerably milder and didn’t warrant a trip to the E.R. I will mention it to our family doctor when she gets her next shot on Thursday, but there really isn’t anything we can do about it. He told us that subsequent shots could result in no reaction, a milder reaction, or a more severe reaction. We were pretty concerned about her and are very thankful that this reaction was much milder! 6. I love to get mail. I’m like a little kid about it, really. When we started Hands and Hearts, I just loved having so many packages delivered all of the time. Now, after several years, I have become a little jaded. I don’t even get excited when a box arrives because I know it is just more inventory. Well, I have been getting my very own mail lately!!! Over the past few days we have received: A box containing some clothes for Noah and 120 (yes, the dc counted) all natural lollipops for the children. This is unimaginable wealth in their eyes! They can’t have artificial colors or flavors, and natural candy is really expensive, so the last time they had a lollipop was at Christmas. They are having a fantastic time with that candy! A box containing, well, a visit to Many, many cards containing the sweetest notes and prayers. One also had some stickers, one had stickers and a Starbucks card, and one had a generous financial gift toward Noah’s medical expenses. It has been so much fun to get these big and little surprises in the mail. It has been like Christmas around here and the children and I are finding ourselves watching hopefully for the mailman each day LOL. Not only are the gifts and treats and cards a joy in and of themselves, but it is so precious and humbling to think of so many people taking to time to do such kind things. Unless disaster strikes (don’t know why I would possibly think that could happen at OUR house!), we probably won’t post another update until after our appointment on Wednesday. Please pray that Noah will recover from his illness and that the doctors will be filled with wisdom and insight. Pray also for Jeff and I during the visit. It is very difficult to spend time focusing on what is “wrong” with this baby that we love so very much, and we also know that we may receive news that is hard to hear. Pray that we would communicate clearly and effectively with these specialists and that they would also communicate well with us. Thank you all so much for all that you do. It is an unspeakable blessing to know that so many people care about our dear little ones! Love, Kate and Jeff and the family |
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