May. 4, 2008
sick little Noah
Posted in Noah Updates
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Our Sarah has always been pretty good about sharing, which is usually a good thing. Unfortunately this weekend she managed to share whatever illness she's got. She, Matthew, and even little Mary Faith have been running temps consistently higher than 102. Noah seemed to be resisting the bug until a couple of hours ago when his temp started creeping steadily up. As you know, any fever of or higher lands him in the hospital for a sepsis workup - and he is almost at now. I called his infectious disease doctor and explained the whole situation with the sick siblings. She agreed to let him stay home tonight even if he crosses the threshold - UNLESS he starts to look really bad or his temp gets extremely high. If that happens we'll have to head to the ER in Greenville. Initially she wanted him brought in tomorrow morning if he was still feverish. He is due for his weekly bloodwork tomorrow morning anyway and I asked if we could just get a blood culture and infection-related labs done at the same time to avoid the drive to Greenville. She agreed, so all I have to do is call her office in the AM to get the additional lab orders. I am SO thankful! If something really is going on, the labs will show a problem; and if he does just have this virus or whatever then we won't have hospitalized him in vain. Virus or not, he and his siblings do feel utterly rotten. Poor Sarah throws up whenever she has a really high fever, so Friday night we were doing the "change the sheets and bathe the girl" thing in the middle of the night. She seems just a bit better today but still looks pitiful. Of course, Mary Faith is nothing short of tragic looking - 102 + is a high fever for such a teeny bit of a baby girl!! Please pray for them all. Jeff needs extra prayer also. He had the toenails removed from his big toe and its neighbor on Tuesday. It makes me hurt just to think about it. He got a prescription for an antibiotic but the toes seem to be getting worse and more painful anyway. The podiatrist is an hour away and Jeff already has an appt. for Tuesday so he is hoping to hold out until then. The poor guy is REALLY hurting. My only complaint is that the healthy children just dug up a joke book and since I apparently look healthy and pain-free they have been blasting me with endless and unbelievable corny jokes. (rolling eyes) Apparently "Must laugh at really bad jokes" is part of the implied social contract of motherhood. Is it wrong to be counting the minutes to bedtime LOL? Maybe the joke book could disappear under cover of darkness . . . . We just can't tell you all how much we appreciate the prayers, comments, emails, and calls. Jeff is working on getting his resume out and we are going to be doing all that we can to build up the business (link now on the right - thanks for the suggestion!). Our dream really would be that he could just stay home, but it would take a miracle for that to happen right now. Of course, we serve the God of miracles so maybe that isn't asking too much! Blessings, Kate |
May. 2, 2008
Lost and found
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Lost is a funny word. Its meaning depends entirely one's perspective. For every lost, there is a found. If someone has lost a game, it means by default that someone else has found victory. If a loved one dies, we say we have lost them - but they aren't really lost. They know exactly where they are, and what they have found. Today my husband lost his job. He walked into his workplace of 13+ years and was told that his position had been eliminated and that his services were no longer required. He was given four weeks of pay and four weeks of health insurance. He emptied out his office then surprised me by walking into our house at 8:30 in the morning with a smile on his face. I couldn't imagine what would bring him home smiling at that hour and I was so surprised that I literally thought I was dreaming when he told me what had happened. We talked for a few minutes, then we called the older children in and explained to all of them that we had been given an amazing opportunity to see God working and providing. You see, I was shocked, but God was neither surprised nor dismayed. This is, for whatever reason, a needful step on the path He has planned for us. It isn't a step that we would ever choose, but that is the beauty of having a loving God in charge of our lives - He is capable of directing us into the places that we need but do not want. On the face of things, this looks decidedly strange. Jeff has been a faithful and excellent employee who has had consistently outstanding evaluations. He was a one-man training department who developed and wrote many of the programs being used at his workplace. Training and safety are an integral part of the foundry business, so it would seem that Jeff had a "bullet proof" job . . . but God saw the need to stir the nest and move us forward in some new, unknown direction today. We don't honestly know what the next step will be. Our Hands and Hearts business is by no means capable of supporting our family, and it wouldn't seem that his four weeks of severance pay would give us enough time to build it to the point that Jeff could stay home full time. He is passing out his resume, but this is a small town and times are hard in this area. Just as we have said before in reference to Noah, we don't know what is going on, but we do know the One Who does know. We need a lot of prayer right now. It's pretty obvious that we need prayer for God's provision and leading. I'd also appreciate prayer that my eyes would stay fixed on God right now and that I would be able to walk in faith through this. Noah is definitely my Achilles’ heel here. One of the first things that crossed my mind is that it takes $1,000 a day to keep my baby alive. I need to remember that my Father owns the cattle on 1,000 hills and this is NOT too big for Him. I'm struggling with a little grief as well. Jeff and I have long desired to move to a home with some land. We've been looking at our "dream home" the past few weeks and Jeff actually met with the owners last night to start negotiating a price. We were hoping to sign a contract in the next few days. I had to call them today and let them know that we are no longer in a position to obtain a mortgage. It all seemed so perfect. All the same, I do know that if God wants us to have that house, it will be waiting for us when we are able to buy it. Noah also needs some extra prayer. He had a negative C. Diff culture, but I felt in my heart that it was a false negative. I asked the doctor to repeat the test, and this morning about two minutes after Jeff broke his news we got a call saying that Noah's test had come back positive. Our pharmacy has called every drug store in town and no one can obtain the necessary new drug. It's been ordered but Noah won't have it until next week. He has been feeling worse and worse. It's subtle and gradual, but he just seems to be less interested in his surroundings. He is also sometimes clearly in a lot of pain. There are times when he is wide open and busy and hilarious, but more and more often he just wants to sit with his head on someone's shoulder. He still asks for food, but he feeds it to everyone else. It's like he wants it but can't bring himself to eat it. Sarah is on the couch tonight burning up with fever. I've given her the last bit of Tylenol in the house and need to go purchase some Motrin in the hopes that it will help. Please also pray for her and that Noah will not catch whatever has her so suddenly sick. Thank you all so much for your love and your prayers. We look forward to sharing with you as God provides and is glorified through all of these needs! Blessings, Kate |
Apr. 16, 2008
Lots of pictures :-)
Posted in Noah Updates
Apr. 14, 2008
Nephrology tomorrow
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As you can tell from my lack of blogging, Noah seems to have recovered from whatever caused that fever last week. We never got a call to bring him back so the cultures must have been negative. We are very thankful for this! Hannah and Jeff got to go on their trip and had a wonderful time. She will blog about it soon. Even though Noah's labs evidently look good and his fever is gone, he just doesn't feel good. He has taken to walking partway across the room, then dropping to a crawl, then just lying down on the floor. He has times where he is more like himself, but overall he just seems weaker and wearier. I don't know why, and of course he can't tell me. It could be that he just feels bad from fighting the C. Diff for so long.He has a nephrology (kidney) appointment tomorrow in Greenville and I had hoped to take him back to the zoo - with my camera this time - but now I'm not sure if he will even feel up to it. I'll just need to play it by ear, I guess. When he is feeling good, he has been up to some really cute stuff. I've been trying to teach him the sign for "bubbles" since September, and last night he finally did it! He LOVES bubbles so much. We just got him one of those "no spill bubble tumblers" since SOMEBODY has a wee control issue over who holds the bottle of bubbles LOL. His newest passion is "helping" us fix his TPN. Fixing his TPN and meds every night generates an enormous amount of rubbish. Some has to go into the sharps container, but Noah takes care of the rest. I put him in his high chair next to me and toss each piece of (non sharps) trash on his tray. He leans over and drops it into the wastebasket. :-) It isn't anything yucky - just wrappers and flush syringes and caps and plastic vials etc. He is tremendously proud of his contribution, even if he misses the trash can most of the time! I'm thankful that I hit on the idea to let him manage the trash as he had been thinking that he needed to take over the "sharp needles and glass vials" department and was being a stinker every night at TPN time. This whole business of throwing things away has evolved into a hobby for Noah. We've pulled his little soccer ball out of the kitchen trash can five times today. He put a fork in the sharps container last week, and yesterday I caught him hustling in and out of the dining room. He was very diligently emptying his drawers of medical supplies and throwing all of them away in the kitchen. As I look around I'm even seeing a set of tubing and a couple of heparin flushes in the wastebasket at my desk. Hmmmm . . . anyone know of a child lock for wastebaskets?? I'm not complaining. It's great to see him up to some "typical" toddler antics. Besides, he is SO cute when he does it. He gets this incredible look of grim determination on his face. I've got my camera on the desk and am hoping to photograph him in the act. We've been asked for details on Noah's cooling vest. We are getting it from www.silvereagleoutfitters.com If you need a vest like this, you can call customer service and they will put you in touch with the right person for a custom made child sized vest. They are expensive (Noah's will be $65) but we hope that the vest will allow Noah more freedom outside. We haven't sent in the final order for ours but are hoping to do so soon. We've also gotten some questions about our homeschooling company. Jeff and I own www.handsandhearts.com . We produce hands-on living history kits and also sell a variety of other homeschool and family products. We aren't a huge company because we only want to sell carefully chosen products that we love and can stand behind personally. I don't want to turn this into an ad, but I do want to let you know that if you are interested in products like this, you can go to our website and sign up for our newsletter. We used to produce a really long newsletter each month and had to stop last year when Noah got sick. We are starting back up again this week! The newsletter will only have one or maybe two articles, but each issue will contain a discount code for subscribers only. This week we will be featuring a number of our favorite things as well as some awesome new toys and puzzles from Lauri. Anyway, if you're interested, you can sign up on our site.  If you know anyone else who would be interested, feel free to share our link. We also offer an affiliate program for people who have blogs/websites/newsletters. This allows folks to earn a commission (money or free products) by referring customers to our site. If you are interested in something like this, you can email our office manager James at affiliates@handsandhearts.com and he will send you an application and details.Whew - we've made a point of not pushing our business on this blog and now I feel like I just did an infomercial LOL. I'm not expecting anything earth-shattering from nephrology tomorrow. It's just kind a routine check, but I'll let you know how it goes. Blessings, Kate |
Apr. 9, 2008
all home
Posted in Noah Updates
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Noah made it through the night safe and sound. He did wake up crying at about 3:30 but Jeff managed to get him settled into bed with us for the rest of the night. By the time we got to the doctor this morning, his temp was down to 99.5. This is a bit higher than it sounds since Noah's baseline temp is about 97.5 or so. They drew blood for a CBC, CRP, sed rate, and blood culture, and pronounced Noah safe to go home -with the understanding that he would need to return immediately and be admitted if the blood culture grows out anything in the next three days. I do think he is sick, but I really don't believe that the cultures will grow out anything. He doesn't look septic to me at all, and he looks FAR better than I would have dreamed based on how bad he looked last night. The GI part of the visit went well. The bottom line is that Noah is NOT where we (our family and our doctor) want him to be. The doctors had all planned for him to be on TPN as a supplement very short term many months ago. None of us ever dreamed that he would still be on TPN and that he would be getting no tube feedings at all. Still, having said that, Noah looks REALLY good. He is happy and walking and looking like a sturdy little toddler. Now that we know that we have a diagnosis, we just need to accept that Noah will, barring a miracle, probably always be dependent on TPN. Even though the TPN is taking a toll on Noah's little body, he wouldn't be doing as well as he is doing if he didn't have the TPN. Noah's doctor is really amazed at well he is doing on it - he had feared much more liver trouble much earlier. Even though Noah's liver is being affected, it is very mild damage at this point. The doctor really exhorted me to just enjoy Noah right now and to be thankful for how well he is doing right now - of course, we do and we are! When we left the doctor's office we grabbed lunch and did a couple of quick errands. I was all set to go home, but it was SO pretty and warm out, and Noah was looking perky, and we were oh-so-close to the zoo . . . . so we spent the rest of the afternoon meandering around the zoo. :-) Noah had never been before and I just couldn't resist! He certainly looked well enough to ride around in his stroller and get some fresh air, so I couldn't see the harm in going. At first I thought we wouldn't make it. He fell asleep in the car and stayed asleep even when I put him in his stroller. After we all used the bathroom and I paid and we got to the elephants, I tried to wake him up - but I couldn't. After about five minutes of trying VERY VERY hard to wake him I was starting to worry and think about things like calling an ambulance, but right at the moment of decision he woke up. I don't know what the deal was, but he did have me scared. Once he woke up he had a great time. The zoo is nice and shady so he didn't get too hot. He LOVED the animals but was completely terrified of all of the birds. Go figure. We got a season pass (costs less than tickets for our whole family to go twice) so I'm hoping to make lots more trips this spring and summer, especially once he gets his cooling vest. Thank you all for your prayers. I really do believe he is out of the woods right now, but we need to keep praying. The continued C Diff could be causing him to feel awful and run this temp. They took another sample at the doctor's office today to see if the toxin is responding to the vancomycin at all. ID is very concerned about how long he has had it, and how severe it has been. I'm hoping to have some lab results (not the culture) tomorrow, and will update if I do. Love, Kate |
Apr. 8, 2008
Tuesday Update #2
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If you didn't read my first update today, you can see it below this post. Peds ID called and we agreed to see if we can get Noah through the night without a crisis. He already has an appointment in Greenville tomorrow at 10:30 with his GI doctor who is in the same building as Peds ID. If we can make it through the night safely, we can get a blood culture and other labs drawn tomorrow at the doctor. He can also be seen first hand. If his temp spikes and/or he starts to look really bad during the night, we will need to go to the ER. If he starts to look bad but it is morning we will just head to the GI office. This offers the possibility of a logistical nightmare. My original plans had been to go to Greenville tomorrow with my mom and have Hannah babysit at home. My mom has a TERRIBLE stomach virus that is going around and she obviously can't go with me. I'll need Hannah with me at the doctor so she can hold Mary Faith while I deal with Noah. I also have a couple of Greenville errands to run and need the extra help to get both babies into stores. Since she is coming, I'll need to bring all 8 children. This wouldn't ordinarily be a problem because they really are well behaved and very fun to be with, but if this ends up really drawn out or with an admission it will be hard on everyone. Jeff just can't come tomorrow. Again, here is a chance to see God's hand at work! I won't update until we get home from GI unless we go in during the night or if it is obvious in the AM that he will be admitted. Love, Kate |
Apr. 8, 2008
End of an era?
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You all know me. If things are going smoothly, I may not blog every day, but I've always promised to blog if there was anything significant going on. I haven't blogged because I wanted to put up some photos and my laptop (where I have my photo software) has been acting just a bit flaky, so I keep putting it off. I've also been very, very, very busy with homeschooling and quite a few (a ton, really) of new projects for our business. Well, today I have to blog. Noah is alternating between unreasonably tired and insanely cranky (think rolling around on the floor screaming, and hitting/kicking/biting anyone who comes near.) I picked him up to try to love him out of the crankiness and realized he was really hot. He's got a temp of 100.5 . 101 lands him in the hospital automatically, but historically 100.5 is enough to do the job and get him a room. I've got a call in to Peds Infectious Disease. They will probably make the call as to what to do next. It could be that we wait and see, or that Noah's nurse comes out and does labs, or that we go to the hospital. Please pray for wisdom for the doctor and Jeff and I, and for whatever course we take to be SMOOTH. We would always prefer a direct admission over a night in the ER - for Noah's safety even more than our own convenience. Hannah's Christmas gift this year is that Jeff is taking her to Vision Forum's Father Daughter Retreat in GA. It's all she's talked about since Christmas. The retreat starts Friday - three days away. It is UNTHINKABLE to have her miss the retreat, and we aren't considering it as an option even if Noah is admitted - but we honestly don't have a Plan B. We are going to have to leave that one up to God and trust Him in that aspect of this as we trust Him in every aspect. Friends who could usually be called on to stay here with the dc so I could stay with Noah are out of town, and local family members are sick, but we know that God isn't about to hang us out to dry. One of Hannah's first questions after learning about the retreat (once she stopped screaming and hugging us LOL) was "What if Noah is in the hospital when it is time to go?" We did all we could do - we told her that we had prayed about giving her this gift, and that we could not stop living because of "what if's," and that we KNEW that God's hand was in this and that every need would be met. Now she gets to see His hand, and that is a blessing. That we need you to pray for Noah goes almost without saying. I believe he is in some sort of pain and I don't know how to help him. He isn't a roll on the floor and scream kind of guy. Quite a few of you commented or emailed about helping Hannah with her missions trip, and we are blessed and humbly thankful for your kindness. Any time that anyone wants to send something to Noah, or our family, or to Hannah, you can just mail it to the address on our website's contact us section. Here is the link: http://www.handsandhearts.com/index.asp?PAGEACTION=CONTACTUS . You can address it to whoever you are sending it to, and we will get it. Even if you address it to the business, our intrepid office manager James will figure out it's for us once he opens it . :-) I will update as soon as we have a plan. Blessings, Kate |
Mar. 26, 2008
Froggy with a chance of tomatoes
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We have been up to all sorts of things since I last blogged - nothing earth-shattering, just lots of things. I haven't posted sooner because we have been so busy and because I had a really hard time kicking my sinus infection. I do feel better now, praise God. I'll share as much news as I can before I have to fix dinner. :-) Froggy tomatoes: We have had some bad weather here. The other morning Sarah loudly announced (with her nose smashed against the window) that it was "Sooo froggy out." Yep, it was. We could hardly see across the street. Later that day we had severe weather including hail and what Sarah described as a "tomato (tornado). It was just a little tomato so the only damage we had was a bit of heavy limb fall. A couple of days ago I was looking for something on Amazon and saw a "Pet Tornado" for just $4. It's a small glass jar with water (?) and some cloudy liquid. There is a Kansas-looking background, and when you shake the jar, the cloudy stuff comes down from the top and makes a tornado. It was SO totally worth $4 to give Sarah her very own pet tomato. We are all in stitches as she shows it to everyone who comes to our house and as she talks to it LOL. Casting Crowns: I had the joy of taking the four oldest children (and Mary Faith) to a Casting Crowns concert in Greenville. We couldn't get a sitter who was "Noah qualified" so Jeff offered to stay home with the three little ones. We had a great time worshiping and enjoying the music, and the Jeff had a great time playing with the little guys. I heard he even took them out for ice cream. :-) Noah News: Noah FINALLY got over that upper respiratory thing, and developed an extremely upset tummy. I'll try to be delicate here, but a *sample* was required from his diaper. The problem was that most of the, errr, sample material was so forcefully produced that it was running down his legs instead of sitting nicely in his diapers. The nurse told me just to line his diaper with Saran Wrap. My first thought was that might sound nice on paper. My second thought was that I really need a raise. My oh-so-precious husband informed me that I could have a raise - a 200% raise. Again, that sounds nice on paper, but 200% of nothing is . . . . I lined diaper after diaper with plastic wrap and the little stinker (literally) wouldn't produce. He woke up every morning with a big sample, but they were no good because we have to know what time the sample was produced. Yeah, I forgot to mention the fact that I had to keep an eye (nose) on him at all times so I would know when he produced. He would wake up from naps the same way. We finally got our sample today. Ugh. I really, really need a raise. I'd take a trip to Starbucks LOL. It smells good there. :-) I am SO thankful for a washing machine and dryer instead of a rock and a river. His IVIG went really well - no problems at all. When I took those photos of him walking at the park, I noticed that he seemed to be rolling his feet in when he walked. You can see it if you look at the pictures. His physical therapist came over yesterday and she saw the same thing. There is a medical name for it which I can't remember, but it means that his leg/ankle muscles are really working right. We'll need to get him fitted for orthotics and new shoes to help correct the situation. Mary Faith news: She is almost 2 months old now and is getting cuter and cuter all of the time. She smiles almost as soon as she makes eye contact with someone, and is really ramping up the cooing. I could just eat her up. She is a happy, contented, beautiful girl who fills our days with more joy than I can say. Our lives are so full and so blessed, yet every time God gives us another little one, we find ourselves wondering what on earth we ever did without him or her! Resurrection Sunday: We had a lovely Easter. We had an egg hunt and lunch cookout with Jeff's parents, then an egg hunt and dinner with my parents on Saturday. We had an egg hunt and lots of family fun at our house after church on Sunday. We decided to let Noah come to church with us Sunday as we didn't want to be apart on Easter. It was the first time he'd gone since he started walking and it blessed me so much to see the joy (even tears) of our church family as they were blessed at the site of Noah zooming all over the place. We all tried our level best to teach Noah to pick up eggs, but he just wanted to stagger around behind everyone else. They all shared with him since he wouldn't gather any of his own. We learned that he does NOT like jelly beans but DOES like chocolate bunnies LOL. It has been nice and warm lately and we were saddened to see that Noah really overheated on Saturday even though it was just in the low 70's. He was dramatically heat-intolerant last spring/summer and really couldn't be outside at all when it was at all hot. I had hoped that his autonomic nervous system had matured even though I know that mito-related issues almost never improve. I would love for him to be able to leave the house this spring/summer especially since he is older and there are so many fun things to do as a family. We did some research and found a company that will custom make cooling vests for toddlers and children. Their standard vests are for adults (for military, under body armor, for athletes, etc.) but their tailor will make one especially for Noah. They even offer special pricing for children with mitochondrial diseases. I'm going to email off his measurements today and we should have the vest in a couple of weeks. I hope it provides enough cooling that he won't be housebound for the next 5 or 6 months. Hannah's big plans: Hannah is going on a misson trip to Minnesota this July. Our former associate pastor recently moved to Minnesota as a missionary to a Native American tribe. He is right on the Canadian border and the tribal land straddles the border. Those going on the trip will be ministering to Native Americans on both sides of the border as well as building a gargage/redoing the basement for our former associate pastor. Neither Jeff nor I are going and this will be the first big trip she has ever taken without us. She will be 15 (!) by the time of the trip and we both feel that she is ready for it. She is responsible for raising all of the money herself and has been working very, very hard at any job she can find. Please pray for her! I was very blessed the other day when she came home and told me that one of the other teens only had to raise about 1/3 of the money and his parents were providing the rest. She told me that it wasn't really fair, and I started to worry about her attitude - until she told me that it wasn't fair BECAUSE this teen's parents were robbing him of the chance to really work hard, to take full responsibility and to see God move and provide for him. She also felt that he would appreciate the trip much more if he had made all of the sacrifices needed to be able to go. While I don't necessarily think it is wrong for this young person's parents to pay most of his way, I was really proud of her take on the situation! I can't ignore dinner any longer - I have two assistant chefs at work but I need to step in and organize the last minute stuff. :-) Blessings, Kate PS Some of you have asked for photos of all of the dc. There are photos of all of them scattered through various blogs but I will try to get up Easter photos of each of them as soon as possible so you can put names with faces. |
Mar. 19, 2008
Extra-quick update
Posted in Noah Updates
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Sorry to have been so long without an update - I'VE been the sick one for a change! I've actually felt too yucky to even type. I'll be fine, but I have a sinus infection, sore throat, really painful cough. I'm on antibiotics and hope to feel better soon. Noah is holding his own. He STILL has that icky upper respiratory thingy. I didn't take him in for an RSV test because he hasn't gotten worse, and I'm reluctant to have him sitting at the doctors being exposed to stuff if there isn't a good reason. Speaking of sitting at doctor's offices, :-) Noah is going in again tomorrow for his IVIG. We are so excited that he has been home for almost two months (!!!!) and hope that this IVIG is providing real help for his immune system. Please pray it all goes well. If you recall, he needs his vitals checked every 15 min and if he doesn't sleep hard enough from the pre-medications (including IV benadryl) , he can get pretty irritated at being messed with so much. As with any blood product, there are risks to getting IVIG so pray for protection as well. Please pray for our neighbor who lives 4 houses down from us. Her house burned today. I was in the shower when the boys came running in saying "the house is on fire!" It took a scary moment or two to realize that "the" house wasn't "our" house. Flames were shooting WAY up in the sky and there were loud explosions (she had oxygen tanks in the house and garage). There were six big fire trucks and many smaller ones working for hours. They are still there. All that remains of the house are the brick parts. The rest burned to the ground, and the inside is all gone. Even the car burned up. She got out safely and is with her daughter who lives around the corner. It is just so sad. The children sat by candlelight (power had to be turned off on our street) and made cards for her. We'll try to make some bread and take it to her with the cards on Friday. Other than a sick mom, an emergency dressing change yesterday, a trip to Greenville tomorrow, and a burning house down the street, things have been pretty quiet around here. :-) I promise a better post next time. I have some great photos of Noah! I'm glad that so many of you were so blessed by his walk in the park. He is walking all over the house and we actually had to put up baby gates - can you believe it??!! God is doing great things in this little boy. Love, Kate |
Mar. 10, 2008
Jail Break!
Posted in Noah Updates
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Most of you know that Noah is on "house arrest" and not allowed to be out in public until 2 weeks after the CDC says influenza is on its way out of SC. We have been diligent about keeping him home from stores, church, etc. Well, today was just the most lovely spring day possible, and the smell/feel of warm spring air coming in the open windows was about more than I could resist . . . so we said "so long" to the housework and laundry and chores and just went to the park. I truly don't think Noah would be exposed to germs at the park out in the open air, so I felt it was a safe choice. Yep, Noah still has his yucky cold, but he was acting playful and wasn't coughing as much as he had been. He misses SO MUCH and I decided that we would see how it went and I could just come home if he started to look like he was feeling worse. Noah's first reaction to the dreaded outside was, of course, panic. To say he was clingy would probably be the understatement of the year. He was the koala bear, I was the eucalyptus tree. Hannah and I each tried to sit down on the grass or the sand with him, but he wasn't going for it. We linked up with his little friends Elsie and Matias. I had hoped that if he saw them playing and having fun, he might realize that it really is OK to play outside. He was willing to sit on my lap on a bench and smile at their antics, but no more . . . . until Matias sat down on the grass by the bench and started snacking on some Cheerios. Suddenly it looked like maybe, just maybe the grass wasn't such a bad place at all. Noah sat down but was still pretty nervous. His friends went home and I decided that since Noah was still so uptight, we would just head home. I went to call the others, and when I turned around, Noah was standing up.  Then Noah turned around and stepped up onto the sidewalk . . . .  . . . . .and just took off walking! He has walked a few feet at a time at home, but doesn't do it often. Today, he was serious about hustling down that walkway!  Hannah gave him a dandelion . . .    He finally decided to turn around and head back. Look how far he has come - he started behind the bench that you can see in the upper left of this photo!
 When he got to the bench, he just kept right on going. You can't even see the bench in this picture. He went past the bench, past the play equipment you can see on the right side of the photo above, and past even more play equipment!
 He WANTED to keep walking around the gazebo . . .
 . . . but he was getting tired and rubbing his eyes, so I had to put an end to the fun. :-)
 I know we aren't really supposed to let Noah do too much, but I don't think I'll ever regret this afternoon. Watching him take off like this was one of the most amazing things I've ever seen. For a short while today, Noah was just a little boy. I couldn't stop laughing as I followed him around with my camera, and for once when people looked our way they were laughing and smiling along with me at the site of a busy little TODDLER instead of looking with concern at a sick baby. I had the time of my life, and I know he did too.
 Love, Kate |
Mar. 9, 2008
Sick boy
Posted in Noah Updates
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Poor little Noah has caught a yucky cold. One of the other dc came down with it first, then a couple more caught it, then Noah fell as well. For the past couple of days it has just been a matter of a runny nose, but today he woke up in the wee hours with a horrendous cough. At times it's hard for him to catch his breath and he obviously feels really yucky. We are praying that this won't get worse OR cause something else awful to happen. His super-scary GI shutdown in Jan. was the result of an energy deficit from a cough/cold, remember? We have been tangibly blessed in some amazing ways in the past few days and wanted to take a minute to say THANK YOU!! Blog Reader Krista S. and her family sent Mary Faith an adorable shirt and some coupons for baby products (what a clever idea!!). Blog Reader Susan in VA and her family sent Mary Faith a gorgeous hand-crocheted baby blanket. It is a soft, pretty pink trimmed in beautiful soft pastels. Blog Reader Malissa B. and family sent something wonderful as well - a big box full of the most precious birth announcements I have ever seen! She took plastic spoons, put two Hershey's Kisses in the bowl of each spoon, then tied pink-trimmed white netting over the bowl of the spoon using pink and white curling ribbon. A tag was attached to each spoon. The tags have a tiny photo of Mary Faith and read, "A Spoonful of kisses to you from Mary Faith Adele Estes" followed by all of Mary Faith's vitals - date, time, weight, etc. We have had more fun passing these out to family and special friends. Friday we got a box from Belvue Baptist Church in New Mexico. This church has a Care Bear ministry. They sent Noah a bear that church members had prayed over. They also sent each of the other children a bear and included several paint-with water books which were just the thing on a rainy day! Yesterday our church photography club had a meeting. They met for breakfast and worship then headed out for the day to take pictures with the theme of "New." Later they met back up to make a slideshow of their photos to share in church. I had planned to go but when Jeff unexpectedly got yesterday off (he's been working Saturdays) I decided I would much rather stay home with him. We have a friend who is a professional photographer and he called us yesterday afternoon. The weather here was terrible and he wasn't finding much that was "new" to photograph. Well, we just HAPPEN to have someone very new at our house LOL and he wanted to know if he could come take pictures of her. I wasn't about to turn down the chance to get some extra-special pictures of Mary Faith so God blessed both of us - he got his "new" photos and I got copies. I made a slideshow of my favorites to share with you all. I hope you enjoy them. The slideshow is under my signature. We will keep you updated on Noah's situation. Thank you for your prayers. Love, Kate
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Mar. 6, 2008
The Vancomycin Follies
Posted in Noah Updates
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It's official. Vancomycin should come with a warning from the Surgeon General: "Warning! Vancomycin may be hazardous to your MENTAL heath." I know it has been hazardous to my mental health, and I wish someone had warned ME! :-) My mental decline began when I got the phone call from ID the other day saying that Noah still has C. Diff. We'd been hoping - really, really hoping - that the second round of Flagyl had done the trick. C. Diff toxins are incredibly nasty and capable of performing all sorts of awful stunts in the human body. We had also wanted the Flagyl to work because we DIDN'T want to resort to vanc. Noah's had it so much (always IV) and because he will probably need it in the future, resistance is an issue. I'll be honest - this was enough to get me a bit stressed out and, well, worried. I faced the worry, went to God, and was ready to move on . . . to the pharmacy, that is. When the lady handed me the little bag of capsules and asked me for $150, I smiled and figured she had forgotten to factor in our insurance. Nope. We paid $150 for a week of oral vanc. Insurance had paid $586. Oral vanc. must be soooome stuff to command a price like that for a week. It was probably silly of me to be shocked, because goodness knows that is a drop in the bucket compared to things like TPN, but you need to remember that my mental faculties were already compromised. :-) The instructions on the prescription said to open the capsules and put one in Noah's g-tube every six hours. We weren't sure if that was every six hours as in "set your alarm and get up in the middle of the night and live like a zombie 'til the c. diff. is gone," or if it meant "get four doses a day from when you get up until you go to bed." We decided to wait overnight and ask ID yesterday. I was happy (oh, so happy) to hear that it was the latter. I really don't love doing meds in the middle of the night! The rest seemed incredibly straightforward - just pop the little critters open, mix with water,shoot in the g-tube. No problem . . . . or so I thought. I pried open one of these priceless little capsules last night and tried to dump the powder into my little cup of water. There was no powder. The capsule appeared to be filled with concrete. I tried to no avail to dissolve the entire thing in water and just ended up with a gooey (expensive) mess. I called the pharmacist this morning. She confidently told me she would put me on hold for a minute and get right back to me. Quite some time later she got back on the line (sounding slightly less confident) and told me that A) all of their capsules were also rock-hard, B) she had called some other pharmacists and THEIR capsules were rock hard, and C) yes, indeed, it would seem difficult to put these into a g-tube, but she was going to put me back on hold and figure something out. Another long wait on hold. I read No Greater Joy and nursed the baby before a decidedly shaken-sounding pharmacist got back on the line and told me that she and her staff had been experimenting with vanc capsules and pretty much only succeeded in shattering them. We agreed to have her look into it and just call me back. When she called back, she sounded more like herself and told me that they had done some research on vanc. The capsules are indeed supposed to be filled with concrete (sorry, the medical term is "Really, Really Hard Stuff."). She carefully read her Top Secret Pharmacists Eyes Only instructions to me. "All" I had to do was to use a sharp implement to cut away the capsule material (those who know me, Kate the Klutz, are already trembling), then put the Really Really Hard Stuff in hot water for 30 minutes. I was tickled pink. After all, how hard could this be if the instructions said to do it? I grabbed some sharp scissors, a sharp knife, and a cutting board; made James promise to take me to the ER if I cut my finger off; and I went to it. A few minutes later my dining room was covered in teensy shards of very expensive Really Really Hard Stuff with bits of capsule coating stuff still attached to them. On a positive note, I did still have all of my fingers. I was hesitant to destroy more than a couple of the capsules given their price tag, so I conceded defeat, grabbed the remaining capsules and as many shards as I could find (they can fly pretty far) and headed to the pharmacy. The pharmacist seemed to feel my pain. I may have had a slightly deranged gleam in my eyes. At any rate, she quickly offered to "just peel off the capsule coating real quick" for me. That sounded like a very good plan so I sat down with Mary Faith to wait. I held her. I nursed her. I chatted with passers-by about how very cute she is, etc. The line at the pharmacy began to grow longer since at least one pharmacist was tied up with my capsules. Mary Faith finally fell asleep on my shoulder and I fell asleep soon after. An hour later I woke up. At first I worried that I had slept through my name being called, but I needn't have worried. About 15 minutes later the pharmacist came up to me holding 40 ziplock bags,each containing assorted bits of Really Really Hard Stuff - minus the capsule coating. She DEFINITELY had a deranged gleam in her eyes when she told me that she never quite expected it to take so long. She assured me that each bag held all of the necessary shards to equal one dose of vanc. She also told me that she really hoped that one week of vanc would be all that was needed to wipe out Noah's C. Diff. I am absolutely positive that she meant it. Love, Kate P.S. THANK YOU all for your ideas and offers regarding clothes for Noah! I will be checking out the links and contacting some of you in the next couple of days. I've gotten some terrific new leads to follow and I am very excited. It is wonderful to see that there are larger-size clothes available! Some of you have tube-fed children and may be interested in this site: www.tummytunnels.com We looked at it when Noah was tube-fed but didn't have a chance to order before he ended up switching to TPN. Unfortunately, the nature of his central line and TPN means that tummy tunnels, buttonholes, cutting off the feet of his jammies, etc. won't work. His line extends out of his chest. The HUGE TPN bag has a line that can't be detached from the bag once we spike it in. The end of the bag line is attached to his central line when we hook him up. Even if it worked to thread the bag line through a button hole or the feet of a sleeper, we would have to disconnect and re-access his line to undress him. Every time we access the line we need to flush with saline and we increase the risk of infection. It is hard to unhook and rehook his TPN without violating sterile procedure and needing to redo some part of the tubing/valves/etc. I don't know if that makes sense, but this works a lot differently than tube feeding in terms of how the lines relate to each other. However, maybe some of those types of ideas will help moms with feeding tubes to deal with!! |
Mar. 5, 2008
Enigma Boy Strikes Again!
Posted in Noah Updates
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We are home - all of us! Noah's cardiology visit went well. His echo and his labs did not show any signs of heart failure - obviously good news. The other labs did not show any reason for his fairly dramatic swelling and puffiness. That isn't such good news because it leaves us not knowing what to do to help. Because he is so puffy and swollen, there was a perception that his liver was being pushed out of place. It can be felt out of place and since severe edema can push the liver out of place, it was assumed to be the case. Some of his liver labs were slightly abnormal today and a closer look revealed that his liver can be felt out of place because it is enlarged, not because it is being displaced. This is a significant distinction, and the labs/enlarged liver are indicative of liver problems/damage from his TPN. We knew this would happen some day sooner or later. The doctors have been amazed that it hasn't happened sooner, but of course we have been hoping for much later. Liver tolerance to TPN varies widely from person to person and there is no way to tell who will do better and who will do worse, so even now we don't have any sort of idea what this really means for Noah . . . . except that the process of damage has started. In summary, we have a very puffy looking little guy with an enlarged liver and who obviously just doesn't feel good, but there is nothing concrete that would justify hospitalization. He is going to have some thyroid tests run to see if thyroid problems are causing the swelling and weight gain, but the doctor suspects the tests will be normal and we are just seeing a case of "Noah being Noah." In the meantime, we are very glad to have him safe and sound at home with us! We cheated a bit on his "house arrest" to take him out to lunch and to run into Babies R Us to pick up some spring clothes for him. He is VERY hard to shop for. He either needs shirts that snap at the crotch or one piece outfits or overalls and shirts - options that will prevent his shirt from riding up and exposing his broviac and g-tube. These are easy to find for little babies, but hard to find for size 18-24 months. Our local department store had some cute seersucker shortalls with shirts and my mom bought him one in each color. We were very tickled to find a few more suitable items in Babies R Us today! Pajamas are particularly difficult. One piece pj's in 18-24 month sizes ZIP, and that doesn't provide a way to run his line in and out. Two piece pj's can ride up and expose his tummy. I finally thought to look on eBay and found some Carter's 2 piece pj's where the shirt snaps to the pants. I don't think they make those in his size anymore (haven't seen them in stores or online expect in smaller sizes) but I was able to get several pair in 18 mo for now and 24 mo to save for later. It is a big relief to know that he has safe clothes to wear but am not not sure what we'll do when he gets bigger. Today at Babies R Us we saw snap-crotch shirts going up into toddler sizes. I don't know if they always carry them that big (never noticed them that big before) or if this is a new thing. I sure hope they continue to carry them. Thank you so much for all of your prayers for Noah during these rocky couple of days. Please continue to pray with us that if it would be God's will that Noah would turn around or at least stay stable so he can stay home. Love, Kate |
Mar. 4, 2008
Tuesday update #2
Posted in Noah Updates
Mar. 4, 2008
Greenville??
Posted in Noah Updates
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We may be looking at an admission for Noah today. His swelling is worse. I took him for a haircut (our stylist cleared out her room so he wouldn't be exposed to any bugs) and he didn't do well. He hates having his hair cut and usually cries. Today he just leaned against me with a very sad face and actually fell asleep while she was cutting. You moms understand that with a sick baby, crying and yelling is actually much better than falling asleep during a haircut! I had a sense in my heart that something was wrong, and as soon as I walked back in the door at home, the phone rang. It was ID calling to tell me that his latest C. Diff. cultures are STILL positive. Since I had the ID nurse on the phone I mentioned the other areas of concern and asked her what we should be watching for/if his nurse should draw some labs, etc. She felt that he probably needed to be admitted. I've been on the phone with a number of people. His cardiologist called and feels that this is probably NOT primarily a cardiac issue but that he supports an admission today. He was going to call ID back and let them make the final call. If Noah is admitted, Dr. Raunikar (cardiology) wants to do a workup tonight. If not, he wants to see us at 9:00 tomorrow morning. If Noah is admitted, I'll go up with Jeff and stay through dinner. While I'm there I am going to contact the Ronald McDonald house across the street and see about getting the family moved in tomorrow. I don't think I could stand being at home while my little guy was in the hospital in Greenville. Please pray that we can work those logistics out if Noah is admitted. I'll update when we know something more. Love, Kate |
Feb. 28, 2008
Eventful Days!
Posted in Noah Updates
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We have had a couple of VERY busy days here. They've been fuller than usual with "daily disasters" like spills and messes and discipline issues and leaky diapoers and constantly ringing phones and just all of the little things that throw a day off track. We also had a big event on Tuesday. Tuesday AM Hannah woke up feeling much worse so we had to rush out the door in the pouring rain to the doctor (their only appt. was 20 minutes after I called, and we live 15 minutes away!). Noah was beside himself thinking that HE was going to see the doctor, so I was having fits keeping him relatively calm. Hannah was wheezing and having trouble breathing and it was all kind of hectic. Matthew was holding Mary Faith for me. He had to move to get out of the doctor's way, lost his balance, and dropped Mary Faith on her head on the concrete (!) floor. She didn't pass out but turned extremely pale and had a goose egg on her head and an abrasion on her temple. The doctor wanted her to go straight to the hospital for a CT scan, so I quickly took Hannah home to go back to bed then spent the afternoon in the hospital. The CT was fine, praise God. Hannah has a touch of bronchitis but is feeling better now. Poor little Mary Faith has been incredibly fussy and has been spitting up constantly. She saw the doctor again yesterday and is still fine otherwise. Today it hit me that she should probably see the chiropractor - I know I would be out if I feel like that! Sure enough, she needed an adjustment and is doing much better now. Noah saw his Early Interventionist yesterday and did very well for her. He saw his nurse today and when she weighed him she realized that he has gained a LOT of weight in the last week - almost a pound. He is looking pretty puffy and is retaining enough fluid that his liver is being pushed out of place. This has only happened in the hospital before and they have treated it with Lasix. She is calling some of his doctors to see how they want to handle it this time. It's important to realize that these past couple of days have been as "good" as my extra-happy day Monday. I used to get really stressed when disasters great or small would derail my plans. I had to learn that the idea of "my plans" is a flawed idea. (I still forget LOL) It's OK for me to make plans as long as I hold them loosely and am totally willing to peacefully accept that God may have different plans for my day. They aren't always fun plans :-) but they are always good plans allowed by a loving God. We did have a bit of laughter in the midst of all of this (in our family, how could we NOT find laughter?). I made playdough with Sarah yesterday while holding poor sweet fussy Mary Faith. She sat playing with it for the longest time. She was silent most of the time, but every few minutes she would just blurt something out. I have NO idea how these thoughts related to each other LOL. (Said to James, our office manager) "I am NOT a meatloaf, so please don't eat me." "The Tooth Fairy eats basanya (lasagna), clam chowder, and Coke." "You need to know I am very ticklish." "I LOVE Frosty. He is the nicest talking snowman I ever knowed in my whole life." "God is SO kind. He gave us lots of babies." (This last was said in reference to a chocolate cake on the table that was mysteriously missing a tiny corner) "See these fingers?" (holding up thumb and forefinger) "Sometimes they do this" (making pinching motion) "Maybe they pinched that cake and eated it." Mind you, I hadn't asked about the cake. I think SOMEONE was feeling a wee bit guilty LOL. You can't get the full effect since you couldn't see her. she was wearing a pink leotard, cowboy vest and chaps pilfered from her brothers, and a toddler-sized Easter bonnet. I wish I had snapped a photo but was working hard to keep Mary Faith comfortable and soothed at that point. I did take some pictures today that I thought you would enjoy.  Mary Faith - one month old today!! I know I'm wildly prejudiced, but isn't she gorgeous??!!  Noah "Cookie Monster" Estes. He's getting away with murder standing up in his high chair, but I had to take his picture before I made him sit back down. :-)  Sarah dressed like an Indian. This photo is a consolation prize since I didn't get a photo of her outfit yesterday! I wouldn't let her outside in that outfit since it is chilly today, so her playhouse was a substitute teepee. :-) Jeff and I are having our weekly date night tonight. You can't imagine how much I am looking forward to a video, steak/salad/baked potato/warm cookies, and some QUIET time with Jeff! :-) Love, Kate |
Feb. 25, 2008
Blissfully uneventful
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 |
Feb. 23, 2008
Watch out world . . . .
Posted in Noah Updates
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. . . . .here comes Noah! Noah took his first steps! He has walked one step to Matthew, 4 steps to his high chair, and three steps to Hannah! I don't know how long it will be before he actually takes off, but we are just amazed and excited that he has been willing to let go and take any steps at all. He is also moving ahead in leaps and bounds with his sign language. New signs include "mommy," "dog," "hot," and "time." He signs "baby time" when he wants to watch his Baby Signing Time DVDs. :-) He has been signing "ball" for some time and absolutely loves balls. He has one bouncy ball that he got last summer and he plays with it a LOT. When I had him in the store the other day (pre house arrest) we walked by some balls and he started frantically signing "ball" and yelling "BAAAAHHH" Well, we left with a new Curious George bouncy ball and a jr. size red soccer ball LOL. It was the first time he ever asked for something like that and I just didn't have it in me to say no to a couple of $3 balls. :-) I told the children that if they could teach him to toss the balls into a laundry basket, then maybe we could see about getting him one of those baby basketball toys with the little net and the balls. I'm sure he would love something like that. After balls, bubbles are probably Noah's favorite thing. When Jeff and I went to Walmart today we noticed that there were some big displays of bubbles/bubble products for spring. We bought a small battery operated bubble-blower thingy for a couple of dollars. The packaging promised "thousands of bubbles in minutes" and we were pretty skeptical, but figured that at that price, "dozens of bubbles in minutes" would be great. Well, this thing really does blow thousands of bubbles. All I had to do was dip it in the little tub of bubble solution then hold down the trigger. Jeff sat out on the deck with Noah on his lap and I blew bubbles until the bottle was empty! Noah LOVED it. He laughed and yelled and finally just got totally silly, shaking his head back and forth while hollering "buuh boos" as loudly as he could and waving wildly at the massive swarm of bubbles all around him. Most of the other children stood behind him and went for all of the bubbles that got past Noah. It was really truly too cute for words and it was a joy to see Noah's delight at the bubbles. It's a good thing we decided to get a larger refill bottle while we were at the store! Hannah needs your prayers. We went to a ladies' luncheon today at church and had a great time. She was thrilled to be invited and included in a "grown up" function like that. She seemed just fine and offered to stay home with most of the other dc so Jeff and I could go to the store without Noah. When we got home she was complaining of a headache so I sent her to take a nap. She got up just a few minutes ago and does NOT look good. She's pale and says that her chest hurts, she's achy, her throat hurts, etc. (Yeah, I've googled "influenza symptoms already.) Please pray for protection and quick healing for her and for protection for the rest of the family. I'm just heartsick that Noah was snuggling on her lap most of the time that I was out running errands with Jeff but we had no way of knowing she was going to start feeling sick. It's ironic that he might have been safer in the store than at home! My voice has been hoarse all day and I'm hoping it's a fluke - I sure don't feel sick at all. We will keep you all posted and are going to try to catch some photos/videos of Noah walking. Love, Kate |
Feb. 21, 2008
Today's visits
Posted in Noah Updates
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Today's IVIG appointment went really well. Noah fell asleep quickly (thanks to the benadryl) and stayed asleep for the first couple of hours, even sleeping through all of the vitals checks. Noah's great friend Zach and Zach's mom Marla came by for a visit which was great. The little cafeteria in the building was closed so we all went out and brought back lunch while Noah napped with Jeff. When Noah woke up he was content to watch some DVD's and relax while nibbling a few crackers. When it came time for Noah's Infectious Disease appointment, his IVIG treatment was still running so his nurse came upstairs to ID with us. She just kept going with his vitals and adjusting the rate of his infusion right through the ID visit. (We have such GREAT health care providers right across the board!) ID is considering switching Noah's flagyl (the antibiotic for his C. Diff.) to vancomycin. Everyone has been reluctant to do this because vanc is the ultimate "big gun" antibiotic and he has already had to take it SO much. We are going to do some cultures to confirm that the C. Diff. is still an issue and will switch to vanc if the cultures are positive. Noah looked really "off" today. His eyes were red-rimmed, he was pale, and he is running a low-grade fever. By the time we got to ID he looked pitiful enough that the doctor ordered a full set of infectious disease labs including blood cultures. These are the labs that would be drawn if we took him to the hospital with a fever. The hope here is that if Noah does have his fever go up, we could avoid a mad dash to the ER. If the labs come back negative, we'll know not to be too concerned about whatever caused the changes in Noah today. If they come back showing something, we will need to decide how to proceed (inpatient, outpatient, or wait and see). If Noah starts to look much worse and has to go in, this afternoon's labs will be compared to the hospital labs to see if he is trending downward. Ugh. I'm voting for a good night's sleep and looking better tomorrow!!! Every time we have seen ID we've been told not to keep Noah "in a bubble" and to let him experience as much normal life as possible. Today things changed. Because influenza is so widespread and severe this year, and because Noah would be highly susceptible to serious complications if he caught it, he is on almost complete "house arrest" as of this point. He isn't to go out in public or to group gatherings of any kind (including church) AT ALL. We are to monitor this site http://www.cdc.gov/flu/weekly/index.htm and wait for it to show that there is a sharp decline in the number of influenza cases in the Southeast. When that happens we need to wait two more weeks before he can go out. All told, it will probably be at least 6 weeks before we can take Noah anywhere. We need to pray that the other children will also be protected so that they do not bring anything home to Noah. We are doing all we can on the vitamin/herb front to build up the other children's immune systems. I'll need to consolidate my errands as much as possible and have Hannah keep Noah home when I do need to go out. Jeff, Hannah, and I will probably rotate staying home on Sundays. Of course, this also means that Jeff's and my standing Wednesday lunch date (while the big kids are at the Y) is off until further notice . . . . In a way, though, this is a blessing. I've been uneasy at the thought of taking Noah out at all, but didn't want to be overprotective. It is sort of a relief to have permission to just hunker down and keep him home - like I can pass the buck and say that we are just following orders. Make sense? Well, Mr. Noah is sitting behind me doing all sorts of dear tricks (playing peek a boo with "his baby" and blowing her kisses) and I can't POSSIBLY sit here and type when I could be watching him. :-) Gotta go! Love, Kate |
Feb. 20, 2008
3.5 weeks and counting . . .
Posted in Noah Updates
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Noah has officially topped his previous 2nd place record for most days at home between hospitalizations as he has been home fully 3 1/2 weeks now! He is clipping along at pretty much the same level - no better, and (more importantly) no worse. We are still battling the C. Diff but he hasn't fallen prey to any of the really serious complications. He goes to Greenville for the day tomorrow to get an IVIG infusion, which will take hours, and to see his Infectious Disease doctor who he adores. We have only done IVIG on an inpatient basis so please pray that Noah won't have any serious side effects and that it will go smoothly. The GI doctor has an infusion room with DVD player, toys, recliner, etc to make things comfortable, but the problem we've had in the hospital is that Noah is premedicated with IV Benadryl (which knocks him out), then needs his vitals checked every 15 minutes (which wakes him up). This is a recipe for an ultra-cranky guy. Jeff is coming with me so we can "trade babies" as needed. He was able to go to his buddy's birthday party on Saturday. The weather was lovely so the party was held outside in their fenced, grassy backyard. There were swings and toddler play equipment and balls and other assorted toys . . . a real dream come true for toddlers . . . . but Noah was absolutely terrified. He plastered myself to my lap (while I nursed Mary Faith LOL) and just shook like a leaf for the longest time. It hit me like a punch in the stomach that he has NEVER played outside before. He has gone for walks in his stroller, and went to the park in his stroller as an infant, but that is it. Our yard is very heavily wooded with no grass and isn't the sort of yard that a crawling baby could play in. Our others were playing out in the yard at much younger ages, but they could WALK. Big difference. Since he has been able to sit and could possibly go in a swing or whatever at the park, he has been too sick to go. The poor little guy had no idea what to do. I was SO glad Hannah was there so we could take turns with Noah/Mary Faith. (Of course, there was no shortage of people wanting to hold Mary Faith.) He warmed up a bit when he saw the snacks :-) but he would never go on the swings or do most of the things his friends were enjoying so heartily. He finally played with a toy car and ball for a few minutes and right before we left (of course) he decided that maybe the little toddler slide was a fun thing. The highlight of the party was the cake. There was a home made yellow cupcake for each child. I cut the top off of Noah's (didn't want to risk chocolate frosting upsetting his tummy) and let him have the rest. I can't tell you how much he relished that cupcake. It was his FIRST cake!! He wasn't eating yet at his birthday, and we have spent almost every birthday this year in the hospital with him feeling too yucky to eat cake. He actually picked every single crumb off of his shirt. :-) It was a delight to watch. Mary Faith is still doing beautifully. I do still need to wake her up to nurse sometimes but other than that I can't complain! Her wake times are longer and she is getting more and more interested in her environment. I can't believe she is three weeks old already. Anybody know how to slow her down?? Bit by bit our daily life and schedule are getting adjusted closer to the way I would like. Things have been so tumultuous for almost a year now (hard to believe he's been so sick for that long) that we have been flying by the seat of our pants in many ways, and many things have been put on hold. I have a lot of corners and closets to declutter and more scheduling things to normalize, but I keep reminding myself that it will take time. I did mange (with Matthew's help) to make up 25+ pounds of ground beef into casseroles for the freezer this afternoon. I also popped one in the oven since I didn't want to think about making anything else today LOL! Some home-canned applesauce is chilling in the fridge and I'll cook some baby peas also to go along with our tater tot casserole (Jeff's favorite!) I think bed will be calling my name after dinner. :-) Love, Kate |