Not what I wanted to post

I've been looking forward to sitting down this weekend and writing a fun post packed with photos from Noah's birthday. . . that post is going to have to wait a couple days longer.

Last night when Jeff was getting ready to hook up Noah's TPN, he found a small leak in Noah's broviac. This is a potentially dangerous situation as it allows bacteria to enter the line and it prevents us from being able use the line for life-sustaining TPN.

We called Dr. B immediately and after determining that no local hospitals could fix the line (worth a shot, anyway!), he told us to head to the Greenville ER. I took Noah while Jeff stayed here with the others.

The line WAS repaired, but not without drama. The repair was done by a very young resident who had never done or seen a line repair before. It was a very difficult experience. The one bright spot was two wonderful friends who volunteered to sit with me in the ER since Jeff couldn't come - thank you, Marla and Zachary!!

We'll be following up with the surgical office next week to be sure the repair looks stable, and Noah's nurse just left after drawing labs to be sure that Noah didn't get an infection anywhere in the process.

While I was on the phone with Dr. B, he told me that there was a problem with the x-rays he had ordered several days ago. (I think I mentioned that?? We saw Dr. B about Noah's increasingly severe leg and foot pain, and Dr. B ordered some x-rays.)

It looks like Noah has Kohler's Disease. In a nutshell, it appears that the bloodflow to some of the bones in Noah's foot has been cut off, and that the affected areas of bone have died as a result. This would absolutely explain his severe foot pain. We'll be following up with an orthopedic surgeon to figure out an action plan.

It's been a lot to digest in a very short period of time, and I am very tired. My head hit the pillow just before 4:30 AM just for the alarm to go off at 6:30 because we had early morning plans in (you guessed it) Greenville this morning. I think my car could make that hour++ drive all by itself at this point.

Noah seems OK right now. He's hovering right below an official fever and has a very "off" look which has his nurse concerned. The labs should let us know if there is a real problem brewing or not. His tummy is really acting up, which is often a warning sign of trouble on the horizon. Monday we'll set up dates with the surgical office and the orthopedist and I'll be sure to update if Noah gets worse.

I promise I will get that very happy birthday post up once I've gotten some more sleep. :-) He did have a great time.

Thanks to those who prayed last night!

Blessings,
Kate

Read more...

Happy Birthday, Noah!!

Today is the day - Noah's 4th birthday. I'm not going to write much now - I'm too busy spending time with the birthday boy! We are keeping things as low key as possible and would appreciate your prayers that he will feel good all day. The grandparents are all coming over tonight for dinner, cake and presents. His birthday party with his little friends will be on Saturday. I'll probably update throughout the week with more details, photos,and (if I can figure it out) videos.

In the meantime, I thought I would share his birth story. I originally posted it to the blog right after he turned one. It's an amazing story of an amazing day when he and I both nearly lost our lives. Enjoy!!


Noah's Birth Story

August 15, 2007 in Noah Updates by Kate E. |

Since we just celebrated Noah’s first birthday, I thought I would share the story of his birth day. He had quite an extraordinary birth in which God showed Himself in many ways. I hope this story encourages you! It is a long story, but I can promise you that it makes exciting reading.

The first amazing thing about Noah was getting pregnant with him in the first place. Jeff and I are “quiverfull, which refers to the belief that children are a blessing given by God and that God alone should decide when children are given to a family. We had our first five children fairly quickly – the oldest was just six when the fifth child was born. Baby number six (Sarah) followed pretty quickly . . . then we waited, and waited, and waited. We were thankful for the space at first because I was going through my shoulder surgeries and therapy, but after a couple of years we grew a little concerned. We wanted more children and it was strange not to have a baby in the house anymore. I was so surprised when after three years we finally conceived Noah! Jeff bought one of those digital pregnancy tests. After so many negative tests, I was afraid to look at this one. I gave it to him and told him to tell me what it said. His face fell as he watched it, and with great disappointment he told me that he had accidentally bought a Spanish test and couldn’t read it! I was in such a tizzy that I didn’t even notice that he had turned it around, or that it had a plus sign on it! He had me going for a few minutes before he couldn’t take it any more and started laughing.

We planned a home birth for Noah (we had some of our others at home) and found a wonderful midwife. I was very, very sick with this pregnancy and was losing a lot of weight. I also had a VERY strange, passionate aversion to anything sweet. My dear husband would offer to fix me some ice cream and I would ask for cucumber slices instead. I am a big chocoholic so this was pretty odd. We didn’t know that it would end up being very important.

South Carolina law requires home birth patients to see a doctor at the beginning and end of their pregnancies to be sure they are low risk. When I was about 14 weeks along I had my first doctor appointment. This was a well respected, very experienced doctor. As he felt my stomach, I could see worry start to spread across his face. He looked more concerned when he couldn’t find a heartbeat. He got another Doppler and still couldn’t find a heartbeat. He finally told us that our baby was dead. He said that my uterus was only measuring about 10 weeks or less and that there was no heartbeat. He said that the baby had evidently died several weeks prior. His ultrasound machine was down so he sent us to the hospital for an ultrasound to get a time of death so we could decide how to proceed. It was a few hours before our ultrasound appointment and during that time I had to really wrestle with God. The conclusion of that wrestling was that this was God’s baby and that God is good no matter what. By the time I went back I was clinging to the knowledge that God doesn’t change and that He would sustain us no matter what happened. The ultrasound tech wouldn’t allow Jeff to come in because they don’t allow other family members to be present for “fetal demise” ultrasounds. Imagine my surprise when the transducer immediately revealed a VERY busy, kicking little baby! Not only was Noah fine, but he was measuring exactly the right size for my due date! The tech quickly got Jeff so he could see with his own eyes. This was a hard and scary thing, but God used it to show me Himself. I had always said that the death of a child was the one thing I could never, ever face. I told Jeff that if we lost a child I would just stop breathing. God allowed me to “lose” Noah for just a little while to show me that He truly was sufficient even in the hardest things.

When I was 18 weeks pregnant my midwife became very concerned about my weight loss and decided to test me for gestational diabetes. To our dismay, the test was positive. We were very thankful for her discernment because that test isn’t usually done until much later in pregnancy. My diabetes ruled out a home birth, and I started looking for a doctor. We went from doctor to doctor but couldn’t find one to take me. My blood sugar was terribly out of control and wasn’t responding to diet, exercise, and medicine. Each doctor I saw said that I was too high risk for them to manage. It was distressing to know that I needed care but no one would help me. We finally found an OB who had experience with insulin dependant diabetics and we also saw a maternal fetal medicine specialist throughout the pregnancy. I was put on injected insulin right away with terrible results. I couldn’t get my high numbers to come down enough, and my body metabolized the slow-release insulin erratically. This meant that one day I would be fine and the next day my blood sugar would rapidly crash so low that I would pass ou
t. This was a scary time for us, and I became worried about Noah.

One night I was praying for him and the birth, and prayed that we would be able to bring him safely home. Almost instantly I had a life-altering change in my understanding. God showed me that I had always looked at safety the wrong way. I suddenly understood that safety was the ONLY option for Noah. He could come home safely with us, or home safely in the arms of God. Either way he was safe. This is so basic, but it was so powerful for me. I had been stressed out and creating my own definitions of “good” and “safe.” We were fighting our insurance company in an attempt to get me on an insulin pump. I was putting my faith in that pump – if I had the pump I would be “safe” and if I didn’t then I was “in danger.” I was very invested in having a peaceful, low intervention birth (less than thrilled about a hospital birth) and decided that my idea of birth was “good” and anything else was “bad.” Right there in my room those issues were settled for me. I really truly began to own the idea that whatever God wanted was good and safe and best. God reminded me of how He had already protected Noah. My aversion to sweets and carbs was a gift to protect Noah and I from the diabetes before I knew about it. This almost certainly saved Noah from serious birth defects or even death. He had shown Himself sufficient when we thought we lost Noah, and He was still sufficient. The peace I had after this was just unspeakable. Of course, now we look at these precious lessons and know that God was tenderly preparing us to deal with Noah’s future challenges!

A day or two later, our insurance approved me for an insulin pump and life became much easier. I was “safe,” but not because of the pump. I was safe because I was resting in God’s will. The remainder of the pregnancy was uneventful. Five of our other children were breech for the entire pregnancy and only turned a few days before birth. We were thrilled that Noah was head down in every single ultrasound and we didn’t have to be concerned about his position. He was still very high right to the end, but we all felt sure he would drop as soon as labor started.

I had to be induced at 37 weeks because of the diabetes. Several doctors who were close family friends warned us that Noah would almost certainly need time in the NICU after birth. We were told that white male 37 week babies born to diabetic moms pretty much always needed a day or two on a respirator because their lungs didn’t develop on track. We were at peace with whatever came and just prayed for God’s will.

The induction was pretty uneventful, except that my labor was progressing slowly. After a couple of centimeters my contractions felt different and somehow ineffective. After a while I voiced my concern. The doctor examined me, then quietly sent for an ultrasound machine. With amazement in his voice he told us that Noah had done the impossible – he had flipped to breech during active labor! We didn’t want a c-section so he agreed to stop my labor and do an external version to turn the baby around. He also agreed to let us try some positional changes while they waited for labor to fully stop. By the time he came back in to turn the baby, Noah was turned more than half way back. The doctor was able to turn him the rest of the way and the induction was started back up. Things moved more quickly at that point. Noah was having some odd heart readings so I accepted an oxygen mask, but otherwise I was able to move around, use a birthing ball, etc. It was great to have things clipping along. After a couple of hours I got up on the bed and a moment later the doctor walked in. As he walked in the door, Noah’s heart stopped. He grabbed the ultrasound that was still by the bed and saw that Noah had started to go breech again and his cord prolapsed. The cord was clamped shut between me and Noah’s head. Everyone started yelling out orders as the doctor grabbed my bed and started running down the hall. They didn’t even disconnect the oxygen, blood pressure cuff, etc. so these things just ripped out of the wall as the doctor ran with the bed. Since I didn’t have an epidural in place I had to be put under general anesthesia for an emergency c-section. As I was rolling along a nurse asked the doctor if someone had grabbed scrubs for Jeff, and he replied that Noah would be dead before Jeff could scrub in. Everything went amazingly fast and Noah was born in a very few minutes after his prolapse. Jeff and my family and doulas were out in the hall and rejoiced to hear Noah crying loudly at birth. He had a 9/9 apgar and was perfectly healthy. In accordance with our wishes, Noah was whisked right out to Jeff who held and cuddled him in the hallway. Everyone was admiring the baby when someone noticed that there were doctors running down the hall into the operating room. Everyone was moving too quickly to communicate to Jeff what was happening. All he knew was
that there was an emergency in the O.R. and that it involved me.

After quite some time the doctor came out and told Jeff that I had experienced an amniotic embolism and came as close to dying as anyone can. This is a rare but almost always fatal complication of birth. Many of you probably remember another homeschool blogger who actually lost her life to this condition a few months before Noah’s birth. For a while I had no discernable pulse, was not taking any oxygen, (oxygen sats were ZERO) and had nearly no measurable blood pressure. It was considered a miracle that I survived.

When I woke up in recovery, I was confused to see everyone, including the doctor, in tears and couldn’t understand why peoplr kept telling me that I had nearly died. All I could think about was Noah! Jeff had him right there and Noah was able to start nursing immediately. I had to hear the story over and over before I could really process what had actually happened to me.

Noah’s survival was almost as amazing as mine. Time was so short for him that if the doctor had been a few minutes away from the room Noah might not have survived. All we will ever know is that God spared both Noah and I for a reason. I feel like today is as much my birthday as his! It sounds trite, but I feel like I was given a second chance. Jeff and I made many deliberate decisions to choose joy and to be thankful for every day that we have together. I really am living my life differently since it was taken away then given back.

Neither one of us had any lasting effects at all from our exciting day. I am no more likely to experience another amniotic embolism as anyone else – among those who have survived this and had more children, no one has ever had it happen twice, so the doctor said it would be fine for me to have more children. Nothing about Noah’s pregnancy or birth was how I would have chosen, but everything was exactly as it needed to be. Step by step God showed Himself and taught us the things we would need later in Noah’s life!



Love,

Kate and family

Read more...

Tired mommy, busy daddy, happy Noah

I am one tired mommy! Jeff left Sunday for Las Vegas for business, and it is no walk in the park to wear the Mommy hat AND the Daddy hat. :-) He and I have an excellent division of labor and he is very involved in Noah's hands-on care when Noah is home. I'm very blessed that the children are such great helpers and are chipping in around the house even more than usual. Jeff will be home late Thursday night and I can't wait to see him again. You would think that it would get easier to be apart since I'm away in the hospital so much with Noah, but it never does get easier and I really miss my sweetheart.

Please be praying for him while he is gone. We've had some questions about our business so I'll try to explain in a nutshell.
1. We have our homeschool company, www.handsandhearts.com. We've owned it for more than 7 years, but thanks to the CPSIA business has been very bad. The current stay of enforcement for the CPSIA expires on February 11 of 2011 and we don't know if we will be able to stay open after that day.
2. After the fundraiser held for us in February, we purchased a franchise for Guard A Kid. You can see their website at www.guard-a-kid.com. The short version is that we go wherever there are children (schools, daycares, camps, pediatrician offices, etc.) and do child safety events. We do very comprehensive child identification packages for the parents and do child safety and abduction prevention training for children. (Did you know that 1 out of 42 children will go missing in his or her lifetime??) This has been an excellent business and we have worked hard to get the ball rolling. Our initial training ended up being scheduled later in the spring than we had hoped, so we hit the ground at an odd time with schools thinking about end of year. Jeff has worked hard and we have a lot of large events scheduled for after the start of the school year, but things have been a little slow during the summer. We aren't alarmed and were told to expect that it would take some time to really gain momentum.
3. Since Jeff lost his job more than 2 years ago, he has been working with (not FOR) a friend of his who was trying to get a new business off the ground. Jeff came on board to offer marketing and sales consultation and help with the understanding that he would be paid on a commission basis when the business began to bring in money. He had the time, he had the vision of what this business could become, and he knew the Lord was in this thing. For almost 2 years the business went nowhere at all, but Jeff kept helping as he could. This spring the thing exploded and this is the business that has Jeff in Vegas this week. It's a little hard to explain - it is a corporate wellness program that can be offered to employees of businesses. It is being marketed to TPA's. TPA's are the "middle men" who interface between healthcare companies and clients. If I were a TPA and you owned, say, Sprint, I would be the person who came to your HR manager and offered him a menu of healthcare options including health insurance, dental, vision, wellness, etc. The healthcare companies woo the TPA's and try to sell their program to the TPA's so that they will be on the menu offered to you, the owner of Sprint. (Making any sense?) Wellness programs are the hottest thing for TPA's and HR managers right now, and this wellness program is truly amazing. Everyone who sees it just loves it. One huge and very powerful TPA invited Jeff and his friend to Vegas this week for a big TPA convention, which is why they are there. This TPA promoted this wellness program in his keynote address and has thrown all of his influence behind Jeff and his friend. Please pray that God will really bless and that amazing things will happen.

The strange thing about this business is that no money changes hands until after open enrollment (usually in October), since that is when companies will actually pay their TPA's for the programs they choose. The TPA keeps a commission, Jeff gets a commission, and everybody is happy. :-) We are praying for an abundant blessing and won't have any idea of the money involved until the end of the year. I have to say that I am so proud of Jeff and his vision, faithfulness, and diligence. He saw the true potential for this thing when many others couldn't, and he has brought amazing skills and abilities to the table. I know that I am blessed to be married to such a wonderful man!!!

All three of the men involved (the owner, Jeff, and one other man) are deeply grounded believers - in fact, all three have been to seminary and/or have degrees in Bible/theology. It has been incredible to stand back and watch what has happened over the last couple of months - like I said, there is no money in hand at this point but after 2 years of no movement it is incredible to see the momentum. (I should point out that Jeff has not invested any money into this. He has just invested his time and talents to assist the owner. Conversely, the owner has helped us out several times and is the man who bought the plane tickets for me to go to FL when my father passed away.)

Please join me in praying for safety, wisdom, and blessings for these men. They also need energy as Jeff told me earlier that they are absolutely swamped with people who want what they have to offer - a great problem to have!!

Noah is doing as well as can be expected right now with no big changes or problems. He's been complaining of a lot of pain in his feet and often says he can't walk because of the pain. I keep hoping and praying that it will stop/go away but plan to make an appt. with Dr. B next week if there isn't an improvement.

Noah has been thrilled with the steady stream of packages arriving for him!! We had originally planned to save them all for his birthday, but since he has recieved several gifts we've decided to let him open one or two a day so he doesn't get overwhelmed on his birthday. He is so good at playing and enjoying things and it seems to be working well to let him really enjoy one or two new things at a time rather than bombard him with stuff. Since my last post, he's been blessed with a fishing set (the perfect size for the tub OR a basin of water), an incredibly cool How to Train Your Dragon dragon egg (I confess that it was SO fun for him that I got him another egg at Walmart yesterday!), a How to Train Your Dragon book (plan on reading that after he gets up from his nap), a magnetic dinosaur playset (he actually played with this until he fell asleep today), an adorable stuffed otter which he has been carrying around almost non-stop, and some very cute shark pajamas (being washed so he can wear them tonight). He is such a funny, fun little boy who will croon tenderly over a stuffed otter, feed it a bottle, and rock it - but then grab a dino or dragon and turn utterly fierce in the hopes that he can scare someone LOL.

We also got a treat for our family - freeze dried strawberries and bananas. YUM!!! These are so good. (I think the brand is Just Tomatoes.) We had tried and enjoyed a small tub of this type of fruit once from Whole Foods but hadn't splurged on it again. We were sent two huge tubs and the children have really, really enjoyed this.

Thank you so much to all of you who have brightened Noah's days in this way. It does my heart good to see him go from droopy and yucky-feeling to excited and distracted by some thoughtful gift. When we made his gift list we were careful to choose items that required a minimal energy output - things that he could play with on the couch or at the table. The things he's gotten have been perfect for that and he is so good at amusing himself that he will sit and play with any given new item for a long period at a time. (I don't mean he only wants to play with new things, or that he rejects things that aren't new anymore - I just want those who sent things to know that he is really, really sitting and playing with them very nicely.)

Please, please keep Cooper, Eithene, Kate, Rachel, and Samuel in your prayers. The links to their blogs are in the sidebar. All three are facing greater-than-usual challenges right now and really need our prayers (as do their mommies and daddies)! All of the children listed need our prayers, but these precious little ones are really struggling right now. Also, little Preslee passed away just a couple of days after I posted her link. I left it up because I know her parents need our prayers and it didn't seem right to take it down. I know there are other moms of special needs little ones who read this blog and I want you all to know that you can always email me or leave a comment and I will be more than happy to include a link to your child's site. I know how powerful prayer can be and how much we have been blessed by your prayers for us, so please let me know if there is another child I can list.

Blessings,
Kate

Oh - and Hannah's foot is pretty much all healed up now. Thanks to those who have prayed and asked about her!!!

Read more...

MII results

We finally heard back from the GI nurse today and it seems like the MII test results were pretty inconclusive. Noah does have acid in his stomach at times despite the medicines he is on, but isn't having acid reflux so the Dr. doesn't feel that it is worth overdosing him on acid meds. The nurse said that the times when Noah did have (non acid) reflux didn't seem to correlate with times that he complained of stomach pain, nausea, etc. Jeff had commented that Noah had an unusually good 24 hours during the test period, so he and I are both wondering if the results would have been different if he had actually been complaining of reflux and choking during the test.

I'm sure we'll be sitting down to discuss the results with Dr. B before too long and I'm hoping he can shed some more light on them.

Last night was Jeff's and my 19th anniversary. When I was a child, the benchmark for "being old" was having your 20th anniversary. Not sure how I got that in my head, but I always figured I would be just short of an old geezer when I had my 20th anniversary. Well, I don't feel too very much older than I did 19 years ago - no geezerhood in sight for me just yet. :-)

Jeff and I have always wanted to go to the Melting Pot restaurant. There's one in Greenville and we actually walked in once . . . then looked at the prices and walked out. I decided to treat Jeff to a DIY Melting Pot last night. I made an easy dinner for the children and parked them in front of a new DVD with instructions to pretend that I wasn't home. (Yes, I used a DVD as a babysitter LOL. Desperate times call for desperate measures.) :-) With some careful shopping, I was able to serve a 3 course fondue meal for Jeff and I to enjoy alone in the dining room. (Full disclosure - we were MOSTLY alone. Noah kept finding ways to slink in.)
I made cheese fondue and served it with cubes of French bread and Granny Smith apples, then we cooked bits of steak for the main course. Dessert was a dark chocolate fondue of course, and I served it with chunks of pound cake, fresh strawberries, and fresh pitted cherries. There was a lot of the cheese and chocolate fondues left so when we were through eating we invited the children to enjoy some. I felt like a mama bird dropping tidbits into all of those eager little mouths. :-) The atmosphere probably wasn't QUITE as nice as the Melting Pot, but the food was great and the price was right!

Noah has had a pretty good week. He was delighted to receive two packages this week - one containing an autographed copy of The Dragon and the Turtle, and one containing an awesome mama alligator toy complete with babies. He is loving both of them and we have had to read him his book at least twice a day since he got it. He's also loving the huge (really huge) squishy Great White Shark he got while he was in the hospital. We've had some pretty epic shark vs. gator battles around here! Thank you so much for your kindness in sending them.

If you've read this blog long, you know that I hate to write about wish lists and the like. I've been asked to post a wish list for Noah's birthday and Jeff and I have really struggled with this. On one hand, it makes us both a bit squeamish to ask for things like that. Noah does love to get things in the mail (who wouldn't??) but we never want to come across like we think he is entitled to get things. On the other hand, we've enjoyed blessing others in the past and it is easier sometimes if you know what the person likes/wants. We finally decided to create an Amazon.com wish list for him but to only post it in a sidebar link rather than in a main blog post. If you WANT to see a mailing address for Noah, or WANT to see a list of things we think he would like, you are welcome to click the link to the side. If you don't want to see it, that's fine. Like I said, he's not entitled to "stuff," and he is blissfully unaware that the list even exists. The link is down toward the bottom under "pages" and says, "Want to send mail to Noah?"

I've reinstalled the Disqus commenting system and it should work this time. You should now be able to reply to comments (threaded comments). Lynette reminded us that we've had a VERY few times where things got a little, ummm, charged in the comments - usually in response to someone posting something hateful. I don't think that threaded comments will give anyone any more "power" to misbehave than any other sort of commenting system but it should make it easier to dialogue within the comments and will make it easier for me to reply to questions directly rather than trying to remember to address them in a post. We'll see how it goes!

Final bit of bloggy business - yes, I am aware that In Ruby Slippers (my new blog-to-be) is written in Latin. This is because I am a highly intellectual homeschooler that simply prefers to write in Latin. Not buying that? -) Fine - it's in Latin b/c that is standard "placeholder" text for new websites. It's something the designer does to let a client see how the text will look on the page. I promise that it won't stay in Latin LOL! If the Lord is willing, I'll be announcing (in English)a launch date on the blog in a few days. I'll be sure to let you all know when that happens.

Blessings,
Kate

Read more...

Relaxing weekend

We had such a nice, relaxing weekend. In case you don't know, today is National Ice Cream Day (my kind of holiday LOL), and our local ice cream shop had a big shindig yesterday. One of the highlights was an ice cream eating contest. Matthew won his age division last year and participated again this year - he ended up losing by a fraction of an ounce, but Sarah was able to enter in the younger group and she won! She and Matthew definitely had the loudest cheering section in the place LOL. I wish I could link to the newspaper article but they are only showing the first couple of lines of the article. She actually told the reporter that "the competition was deadly" and that she "almost fainted" from brain freeze! (There's a newspaper clipping for the scrapbook!!) That child is such a hoot and we never know what she is going to say. The prize was pretty cool - a gift card sufficient to buy 4 box seats at the baseball stadium in Greenville. She and Matthew also each got t-shirts, frisbees, cooshies, and coupons for free ice cream. She is NOT a sports fan at all, so when she realized that the boys were drooling over her prize she offered to give it to them. We rewarded her generosity by getting her a little bead set she'd been eyeing at Wal-Mart, so it worked out great for everyone. :-) (BTW, they have a policy of only one sibling per age group. Sarah and Matthew were the first to ask if they could participate, which is why they did it but the others didn't.)

Last night we had some friends over for dinner and had a great time of fellowship. Noah is good buddies with 2 of their children who are close to him in age. He had such a good time getting to play with friends and it was a treat seeing him enjoying himself so much. The only problem we had is that he melted down when everyone else went outside to play and he had to stay in. It's not common for him to be bothered by this, but last night he wanted very much to be in the middle of the action. When the other children saw what was going on, they quickly agreed to bring the fun back inside where it was cool so that he wouldn't miss out. :-)

Today has been rainy and stormy. My mom surprised us by treating the entire family to the movies this afternoon right after lunch! We saw Despicable Me - absolutely adorable and very funny. I cried at the end . . . :-) We went back and forth about taking Noah decided to let him go. There is no flu or anything running through town and we wanted him to experience seeing a movie in a theater. He's been REALLY wiped out today and didn't enjoy the movie like we thought he would. He wasn't scared or unhappy to be there but pretty much just wanted to doze in my lap with his head on my shoulder with only the occasional peek at the screen. He roused for the credits and laughed really hard at them. He cracked us all up by telling us how much he LOVED the movie and wants the DVD. It really was a very funny movie and I'm sure he'll enjoy seeing it when it comes out on DVD and he can watch it while lying down on the couch.

Since we got home he's been saying that he is "too sick to walk." He obviously feels bad but isn't acting really sick per se - just totally wiped out. We tried to keep things low key last night but maybe he played a little too hard with his pals.

I opted for a lazy, rainy day nap with Mary Faith after we got home (if you know me in person, you'll know I seldom nap, but between the sleepy toddler and the rumbling thunder I couldn't resist it!) and the dc have been hanging out playing chess and Uno all afternoon. Jeff and I decided to go for a date night dinner together at home after the dc are all in bed - the perfect end to a great weekend.

The whole weekend just felt so NORMAL. I didn't really accomplish anything, but I'm fine with that. It was amazing to walk away from all of the stuff on my to-do list and just have fun for 2 days straight.

We should get the results of Noah's MII tomorrow, and I'll try to post at some point. Please pray that he wakes up perkier and not "too sick to walk." Also, he is continuing to really, really struggle with the tiny bit of g-tube feeding he gets. The other night the feeds were backing up and leaking out of his stoma only a few minutes after we hooked him up, and he's woken up drenched in formula for several days in a row now. I'm guessing that the GI nurse will be the one calling with his MII results tomorrow and I hope to run this by her.

Blessings,
Kate

Read more...

Much, much better!

Noah is feeling much better today! I got some insight into his sadness and fears this morning. When he got called back to the treatment area so they could take out the tube, he looked at me with tears and said, "Me don't want a new one."

Poor sweet boy knew we were taking it out - but he thought he was getting a replacement! All I could think of was some of the trauma he has experienced with repeated blown IV's. We go to the treatment room and take the IV out but then we put in a new one. I really thought we had addressed every issue surrounding this procedure but obviously missed a big one. I think this explains his sorrow at least in part. Aria's comment on my last post, while hard to read, also offers some insight. We have been trying to give Noah choices as much as possible - things like whether he wants to sit up or lie down for a procedure, etc. We also try to give him choices when it comes to comfort measures and are encouraging him to tell us what sounds best.

I have a quick housekeeping comment - we are working out the bugs in the commenting part of the blog. I mentioned that comments would be threaded (you could reply to a comment) but obviously they aren't yet. We had some problems with the layout and appearance of the comments and just got that fixed. Getting the threaded Disqus comments up is the next step.

Thank you to all who let me know you like the new blog. I got the template from www.premades4purpose.com and have been very happy with it. It was very inexpensive (4 for $10) and the designer has been great about helping us workout the little glitches that showed up. Hannah the Brilliant got the pictures up into the header and made the Praying For Noah button. I did the rest of the layout and thingies (that's the technical term LOL) on the side. :-)

Blessings,
Kate

Read more...

Loved

Noah is so loved. I love him more than words can say - beyond expression.

It is deeply comforting for me to know to know that the Lord loves him even more than I do - even more than I can imagine.

As he gets older, we continue to pray that he will become more and more aware of how much is he loved. Today for the first time he seemed to question it just a bit. The MII procedure was very hard for him. He fought as hard as he could against it while once again Jeff and I had to help hold him down. Once the tube was in he stopped crying but remained deeply sad and would not let me hold him. He would not sit on my lap. He's hardly spoken. He's not in any unusual physical pain but this procedure seemed to hurt his little spirit. We don't know why THIS time was different, but it was.

As usual, he perked up a little bit when he got home. His brothers and sisters always seem to be the best medicine for him. We are praying that tomorrow when the tube is removed his relentlessly cheerful spirit will return.

This song is for you, little man. You are loved.

Read more...