A Random Update.....

.....just because I feel like blogging, and the house is quiet right now!

Myles has been at Hobby Lobby for almost 16 years now! He got a $500 (yes, that is 5 HUNDRED dollar) gift card to spend at the store as a thank you gift. He got one at 10 years too. We always enjoy spending it, and I think we even still  have some left!

We recently bought a new camera, so I don't have many pictures to post yet, and the few I do have were taken on my cell phone. Here is one inspired by Myles. He had a minor accident.....the only thing that was damaged was the mirror. The plastic part holding it on was broken, so he used his OU duct tape and "rednecked" our van!!!!

Nothing much has changed for me. I am still enjoying life, seeking to please YHWH in all I do. I mess up, but HalleluYAH, He forgives me and teaches me and helps me mature more in Him. I have been more withdrawn from others lately, but I think it is good sometimes. I am closer to my family and my heavenly Father, so I am very happy and content right where I am.

Jonathan is so big and mature now. He hasn't "shot up" yet, but I know he's about to. He is just a few inches (4 or 5) shorter than I am now! He is going to be 12 in May. He is loving Boy Scouts, and in fact, they went camping last weekend in the COLD. Crazy boys! Myles went too, but he ended up getting a ride with someone and came back after the first night. Hehe! He admitted he couldn't take it and left Jonathan behind! Jonathan did really well though. He said he was actually "burning up" the first night in his military sleeping bag with hand/foot warmers. I guess I didn't need to worry.

Jayla is REALLY into horses now and has joined a 4-H horse club.  As soon as I finish a quilt for Myles (starting to cut it all out now), I already have everything to make her a horse quilt! Her furniture is already a dark brown, and she has a few decorative pieces already; a cowboy hat coin bank, a light switch plate with a pair of boots on it, a figurine of a girl barrel racing, etc. She got to ride "Peanut" last Tuesday night. Peanut doesn't like to go fast, in fact, you really have to work hard to get him to trot, so he was perfect for her as a beginner. She has never had a lesson, but she learned quickly how to guide him and make him go. Once she was confident that she really wasn't hurting him when she kicked his sides, she was kicking like crazy trying to go faster! That girl! She looked like she knew what she was doing after just 5 minutes or so! She was the same age as a couple of other girls, but she was the only one who couldn't reach the stirrups. She had to have help getting up and down, but she didn't seem to mind, as long as she could RIDE!

Jacob......every time I look at him and think how cute or sweet he is, he either farts or picks his nose. What a kid! I can't believe he is 7 now. He is a LEGO maniac, hoarding them all and playing with them every chance he gets. He even loads up his backpack and brings them along wherever we go. He also still loves trains (but not if they have faces), and in fact, just checked out several books on trains from the library yesterday. And Jacob sure is smart. And he is reading now! He didn't want to for the longest time, so I just never pushed it, but I know he COULD have if he wanted to. I told him that, and he laughed and said, "Yeah, I could have." That stinker! He is quite the engineer too, always building things or trying to figure out how something works. He has always been like that. His latest thing he did on his own was made some jet packs for him and his two little brothers. This may not be "genius", but I was impressed that he took a quick look at a picture (maybe 5 seconds) and declared, "I'm going to make one of those!" and then off he went! I don't have a picture of the ones he made yet, but this is what his almost looks like (this was made by an adult, so it looks more.....realistic).

Jack-Jack is getting so big! He is continuing to improve in his speech. He is still often difficult to understand, but we can understand a lot more as the weeks go by. I also noticed recently that the helix (outer rim) of his ears are plumping up! This is huge to me, as this is one of the characteristics or symptoms of his genetic disorder, and it seems to be going away! We are actually trying to HEAL him with proper diet, essential oils, prayer and other things. We don't want him to just survive, we want him to THRIVE, and I believe he can (and is). We love him just the way he is, but we want to help him be the best he can be, and he's growing, maturing and getting healthier all the time! In fact, it has been about a year since his last seizure. He even had a fever a few weeks ago, but he didn't have a seizure with it! All glory and honor to YHWH!!! Thank You, Father!!! Aside from health issues, he is talking in complete sentences almost all the time now. He absolutely loves to color and draw (always has), so he does that any chance he gets, and he's pretty good! He also still loves music, and we hear him break out in a random song quite often. He is such a joy. :)

Little Joe isn't quite so little anymore. That kid gained 2 1/2 pounds in the last 6 weeks!!! He is one week from turning 14 months old now. He weighs about 22 pounds, has 8 teeth and eats like CRAZY, still nurses (even at night!) and is about to take his first steps any moment now. He can say quite a few words too, but most of it is repeating. A few days ago, Jonathan was playing a game on the Wii and saying, "Die! Die! Die!" Joe was in his high chair eating and started saying "Die-die-die-die-die!" Too funny! He still needs Mommy quite a bit, but he is becoming more independent and just has to come "touch base" every few minutes now. Jack was never like this, and in fact, was completely the opposite, so not only is Joe my clingiest baby, but I haven't had a baby even close to this in 6 years, and the one before him was opposite. So I have been very busy for over a year now with this baby! I think I can finally see my independence in the near future. LOL! But really, this is such a short time in relation to our lives, so I'm here as long as he needs me. I love this little man!

Our homestead is coming along! We are still putting up fences and pens, but we now have two dogs, 7 chickens (still), 6 ducks and a goose. We probably won't get any more ducks now since they are mostly for pets (some lay eggs), but we do want to get lots more chickens, for eggs and meat. We also plan to get some meat and/or milk goats, and/or sheep, and/or a cow. We haven't decided yet, but we will definitely be adding more animals very soon, probably for milk first, then meat. We also want to get a guard donkey and maybe a horse or pony or miniature horse. So many decisions! I love that we are moving toward being more self-sufficient though. In fact, we already are buying most of our groceries now from co-ops and only use the grocery and health food stores for those occasional items we forget to order or run out of. I love it! So much fresh, raw, organic foods, many locally grown!

The younger three are up now, so I guess that's it for this update. Please leave me a comment and let me know how YOU are doing! I'm not good at keeping up with blogs these days, but leave the link to your blog in the comments and I'll check it out. Happy Thursday to you!

What a week!

I've got lots more pictures to add here. Joe has been such a joy to us! This has been quite a week though. Between hormones, sickness, pain and lack of sleep, I am a bit overwhelmed right now!

Tuesday was our first day home from the hospital. I was feeling pretty good over all and had lots of energy that morning, but then I noticed a "crackling" noise when I breathed. There was something in my lungs! The one and only time I noticed this before was when I had pneumonia after Jacob was born, and as the day went on, I was determined not to let it get as bad this time as it did then. So I called the doctor and told them what my symptoms were, and they called in some prescriptions for me! I was so thankful! When I had this before, I thought I was going to DIE, and I may have if I had waited any longer to get to the doctor! The symptoms and the timeline this time are exactly the same as right after Jacob was born. Also, I had the same doctor and hospital, and they were both born in November. I'm not really sure if there is a reason this happened or if it was just "coincidence" that both instances have so much in common, but I am trying to see if there is a link somehow. I didn't get sick after my 2nd c/s, and all the circumstances were different. Hmm.....

So later that evening I did have a low-grade fever, but the next morning I was starting to feel a little better. Then I discovered, after having a 10-pound baby, that I had only lost a couple of pounds! UGH! So I called the doctor again and they called in another prescription for Lasix, and it is working!

Also on Wednesday, Jack was starting to feel bad. He had that "croupy" cough and didn't want to eat, he just wanted me to hold him. We had him in bed with us so we could keep an eye on him, and then shortly after midnight, he had a seizure! His breathing had become pretty labored over just a few hours, so Myles took him to the ER. He woke Jonathan up and took him with them, mostly for the car ride (to keep an eye on Jack).

So here we are today, keeping a close eye on Jack while trying to keep him separated from Joe. Half of us were up most of the night, so it is going to be a long day. I am managing pain, which is getting better, and the meds for pneumonia seem to be helping, but I am just overwhelmed right now! I am trying to be positive, but I can't help but wonder what will happen next? Whatever it is, good or bad, I know that God is in control and He still loves us. We will still praise His name forever!

One bright spot in the week....a friend from church took some awesome pictures of Joe last night! She has her own photography business, and she gave us a photo shoot as a gift from her to us. We have never had newborn pics before, and they were so sweet! She did such an awesome job with them, and I can't wait to see the end results!!!

Here are more snap shots from the week, then I think we'll be caught up.....on the last week, at least.

Still at the hospital.....

Jayla spent the last night there with us, so we had a girls' night, with snacks, a movie and plenty of baby holding!

Jayla had some fun with the camera..

My little engineer, trying to figure out how this works.

My friend, April!

New t-shirts! I only finished 2 of the 5 so far.

About to go home.....

From Myles' work!

Finally home!

Got milk?

Jack's latest trip to the ER

Jack in the hospital, after his latest seizure episode on the 10th of this month. He got crayons and a sketch pad for Christmas, so that kept him busy most of the time. He loves drawing!!!

You can see here where they had to poke his arm. They finally got a good flow of blood in the wrist after poking both arms, one of them twice, so they wanted to leave it in "just in case they needed it again". Just as they were finishing up, I could tell his fever was coming back by the way he was acting and he was starting to get warm, and then he fell asleep fast.

After a short nap, he got a popcicle and finally got more meds for his now-very-obvious fever! It didn't take long for him to get back to normal temperature again, and by then we were about to go home. They didn't feel it was necessary to admit him, but at least we got a quicker appointment for the neurologist and the geneticist!

This first video was shortly after we got there. He'd already had medicine, and you can tell from the video he was feeling much better! :) I don't have much video of him at all yet, so I had to get him singing and dancing.

The next video is Jack eating his popcicle. I thought it was cute the way he would just like it (maybe it's a mom thing), and then any time he accidentally licked the stick, he made an awful face. Hehe! You'll see that near the end.

Update on Jack!

Nothing diagnosed yet, but we are getting closer to a diagnosis for whatever this syndrome is that he has!

He had an appointment with the geneticist today. This was a new (to the clinic) doctor, so we had a new set of eyes to get a fresh look at him, while he still had all the previous information on him in his folder. I liked the other doctor just fine, but this guy does seem to be more aggressive in wanting to nail down a diagnosis. He did tell me at least twice that he agrees with me that there is "definitely something there" that is abnormal, different from my other kids. He looked over every inch of Jack and even pointed out some things I didn't know, such as a slight incurving of his forearms, a slightly webbed neck, smallish chest with wide-apart and flat nipples, broad and flat nasal bridge and maybe one or two other things I am forgetting. Here are the other things we have gathered over the last year and a half. Some of these may be insignificant or family traits, so that is why it can be so difficult to diagnose something like this if blood tests are not 100% accurate.

• wide-set eyes
• little "flap" of skin in corner of eyes over tear ducts
• small-ish jaw
• large fontanel (finally just closed!)
• very poor balance
• possibly poor muscle tone/weakness
• seizures (first two with fever, 3rd he stopped breathing then had fever next day)
• speech difficulties (only says maybe half a dozen words, but he will TRY to repeat just about anything.....could be caused by a hearing problem, which will be tested for soon)
• doesn't seem to be scared of anything or anyone
• seems slow to catch on to things and is developmentally delayed
• a few ear infections (the most my other kids have had in their whole lifetime is two, I think!)
• very laidback personality
• does not scare easily (or at all!)
• seems to have a decreased sensitivity to pain or touch
• is not as attached as my other children were at this age
• is very sweet and loving but does not really hug or kiss anyone (just started some)
• flat helix (outer rim of ears)
• my pregnancy with him was horrible.....I was much more sick than than the others, then I developed the HELLP syndrome and he was born c-section 6 weeks early.
• He was failure to thrive at 8 months
• short stature (he is about 5% on height and 50% on weight)
• those "coffee and milk" birth marks, a.k.a. Angel kiss on forehead and stork bite on back of neck
• nearsightedness (or will be as his vision develops more)
• possible heart murmur
• inturned pinky fingers (Jonathan and my mom also have this)
• (added 1/10) may not have any sweat glands, or they could be too small (we have not noticed any sweating since this last appointment in September.....if this is the case, it could be the cause of his fevers rising quickly and causing seizures!)

So the doctor's best educated guess for today (not a diagnosis yet) is the Noonan syndrome! Jack does seem to have a lot of these characteristics, so we will find out soon! They took some blood today and will look at his DNA as well as another thing or two (can't remember). He will also go back in soon for an echocardiogram, plus he wants him to have his hearing tested as well as some speech therapy. If this is what Jack has, he should go on to live a mostly normal, healthy, happy life! Praise God!!!!! He should be able to marry and have children, though his children will have a 50% chance of having this as well. But that is okay! If they are as sweet as Jack is, I'll take them any day! :)

I am amazed at how God created such amazing creatures of all kinds, even in this sinful, fallen world where there are many imperfections. His creation is still miraculous and amazing, perfect or not! I am thankful that Jack seems to have a mild syndrome, whatever it is, but even if it were more serious, I thank God daily for giving him to us. He is such a joy.....such a huge blessing to our family. :)


(added 1/10) Jack does not seem to have Noonan after all. We are still waiting on the most recent test, but after 3 (I think) tests for Noonan so far, we have yet to get any positive results. It can be very frustrating! It's not that I want him to have this, but we know he has *something*, and we just want to have a name to put to it, plus it might help us better treat his condition, if able.


The echocardiogram came back normal, hearing test was normal (but they just did the screener test), and he is currently in speech therapy and really enjoys it! He is learning to say a few words, but as far as understanding him, I can't really tell much difference. We enjoy it though, and he is also learning some new signs he did not know before (American Sign Language).

The results......Drum roll please!

Jack had his follow-up doctor's appointment yesterday. The EEG came back normal. YEA!!!! The MRI was kind of inconclusive though because the abnormality that showed up on there is likely from the hemorrhage he had when he was first born. (He was a preemie, and brain bleeds are pretty normal for preemies. It was just a grade one and it resolved itself over several weeks.) We don't know for certain that is what it is from though, so she went ahead and put in a referral to a neurologist.

I asked her if the hemorrhage could possibly be the culprit of the seizures. Of course she didn't know for sure, and we may never know, but she doesn't think it was because he didn't have his first one until 13 months of age, plus there has always been sickness associated with the seizure and two out of the three he had a fever.

So we really don't know anything for sure yet, but we will at least get further testing, if needed, or medication if the neurologist decides that is the best next step. At this point I am willing (maybe even eager?) to get him on meds if it will prevent more seizures!

It may be a while before we find out anything else, but I will update when we do. Thank you again for all your prayers, and please continue to pray for no more seizures as God brings Jack-Jack to your heart and mind. :)

Here are the actual results. Click to enlarge.

EEG

MRI