PJ updates

Hi all, time for an update on the development of my son. PJ was seen on 12/15 for his 15 month check up. He weighed in at 20 lbs, 4 oz (just under the 50th percentile on the Down syndrome growth chart) and measured 28" long (just over the 10th percentile on the same chart) What does this mean? It means he's a shorty, and his weight gain has slowed down a lot.

The reason for the slow weight gain is because he's been spitting up/vomiting since July. At first I thought it was just baby reflux, and his Dr. put him on zantac, and all the advice I got pretty much said, well, as he gets more mobile, more upright, you'll likely see this lessen. OK, I patiently waited. (right, not so patiently) He became more mobile, and more upright, the spitting up continued. We switched him to prevacid and his pediatrician had a swallow study and an upper GI done. Results? Mild and infrequent aspiration, no thin liquids. OK. We also had a referral to see a pediatric gastroenterologist, but the first appointment they could get me was for November. OK, while waiting for that to happen, we switched from Prevacid to Prilosec. No change. A few people said that maybe at one year, when he changed from formula to whole milk things would get better. Well, they did not. In fact, it was worse in that the milk would come up curdled, and talk about STINK? ugh. So, I'm thinking, lactose intolerance? I switched him to soy milk. A day or two of relief, but then the spitting up started right back up. I gave up on the reflux meds and eventually the spitting up became acidic. You know, VOMIT. Stinky vomit. (ok, sorry) So, he's back on the prilosec, it doesn't stop the vomit, but it will at least keep the acid down to avoid damaging the esophogus.

We saw the Ped. GI in November and his thought is Celiac Disease. (intolerance to gluten, found in wheat) The way to treat? Gluten free diet for life. He drew blood, BUT, (says the Dr.) the blood test is often inconclusive, can give false positive, so the REAL test for Celiac is an endoscopy. It's scheduled for 12/31. It was scheduled earlier, but we had to postpone because PJ got congested, and they wont do it while there's congestion. So, the throwing up continues, laundry for PJ happens all the time. I really don't think it's Celiac disease. There's a few OTHER things it can be, and they are all taken care of with surgery. I don't look forward to any of it. Whatever the problem, I'm just not happy about it.

I spoke with the Nurse at the Ped GI Yesterday (12/17), and she indicated that it is NOT Celiac, and that false positives sometimes occur, but not so much false negatives. Yay)I also spoke with Leah on the phone the other day, and she gave me a lot of ideas about what could it be, and helped me to make a list of questions to ask the Dr for further diagnostic tests and questions. (Thank you so much, Leah!)

On the other hand, PJ is a mostly happy baby, crawling all over the place, pulling to stand, and now standing up without assistance. He can stand 30 seconds or so without holding onto anything, and any minute now he's going to start walking. (*fingers crossed*) He babbles a lot, different sounds, yells a lot, loves his big sister Rebecca, claps his hands, gives high fives, plays peek-a-boo, puts his hands up for "so big", and is really "on the go"

I'll update again after the endoscopy. Or before if something else happens.

One other thing - a question for anyone - you know the little things we put on our blogs that show the our kids ages? The tickers? I would sure love a ticker that I could update with weight and height growth, for keeping track purposes. Anybody familiar with that? Or anybody smart enough to create one? I can't be the only person who would be interested in one, right?

Fa la la la la la la la la la.

Hi folks and Merry Christmas. I know I've been a bit scarce of late, and I think it must be a personality trait of mine, when I get stressed out, I become silent. Sometimes it's a good thing, and sometimes not so good. I'm going to be asking you for help, so a brief rundown is called for:

Daniel's unemployment ran out 3 weeks ago. We continued to file for benefits, because that's how you access the emergency unemployment. Well, a week or so later he got a letter in the mail that he had not paid in enough to qualify for the emergency unemployment benefits. Normal unemployment here in NC is 26 weeks. Daniel got 13 weeks. I guess because of the amount of time he worked here in NC, or maybe the dollar amount. I don't know, I can't figure out the "ever changing to not help out those in need" rules from day to day. Sorry, I don't mean to sound bitter, in fact, I'm a happy person even with no money. The problem is, My landlord isn't of the mind that just because we lost our income that we get a "pass". The Electric company, same thing. The house we live in is all electric, and we've had an unseasonably cold Autumn, so the heat has been running, and the light bill is $180.00 this month. My mom has made sure that the kids have a Christmas. It will be lighter than the norm, but that's ok, my kids are loved and don't need much. I know I should ask my church for help, but to be honest, I haven't gone to church. I will, I need to, I want to, BUT... How hypocritical to start going just to ask for help? I can't do it. That's why I'm here, laying it on the line to you. Those of you who "know" me because we've been "e-friends" for awhile, know that this is not something I do on a regular basis, nor have I ever done. I just hope that some of you are in a position to help. I'm looking for work, have been to two staffing agencies and on one interview, which that company is looking to interview a few more people next week and make a decision the week after that. I'm told I'm in the running for that one, and I certainly hope for the best, but if they haven't already decided on me, who says they will?? I look everyday for work, send off my resume whenever I see something I can do, but I know that I'm not anywhere near the only person in the same boat, and I don't know how long it will be before there's actually an income. Daniel installs HVAC units in new construction homes. New construction does not exist in NC right now due to the economy. One of us needs to stay home with PJ, because we don't have, nor can we afford daycare. It SHOULD be easier for me to find work than Daniel; he looks everyday, but there's nothing out there for him right now.
My mom, on a very limited income, will of course let us move back in with her, if it comes to that. Let me just say that I will do that if it comes to that, but NONE of us want to move, and especially into her little house. There's really no room for us. I just think that with another month or two, one of the two of us can land a job so that we can remain independent.
So that's where we are. In my profile there are a few different ways to get a hold of me, or you can comment here and I'll send you my address, If you are in a position to help. This is not easy, but we really need a hand. If you've made it to the end of this post, thank you for reading. Thank you for caring.

This - that and the other

Time for an update, since it's been nearly a month. PJ started getting teeth, a bunch at once, and in the wrong order. He's not been the happiest of campers, as it seems that all 4 molars are making an appearance. At last look/feel, he has two front(ish) bottom teeth, both bottom molars, and a bottom side tooth, all broke thru our just about. On top the 2 front teeth are showing thru the gum, but haven't broken thru yet, but one of the molars has, and the other one is swollen and red, but not thru. Needless to say, I'm sleepy. :o) PJ's throwing up has diminished greatly since putting him on soy, but NOT completely gone away. Yesterday was his initial visit (finally) with the Pediatric gastroenterologist out at Duke. We got to stop by and see Ethan and his mom, Kristen for a few minutes, but PJ had totally missed all naps yesterday, and was having a spitty day, so we didn't stay long, but Ethan looks GREAT! Kristin, it was really nice seeing you!

On to PJ's appt. They took blood, specifically to test for Celiac. I'm not very familiar with this, but according to the dr, it does affect kids with DS at a higher rate. He went on to tell me that at PJ's age, the blood test may have a false positive or a false negative, so we scheduled an endoscopy to know for sure. This will happen next week, Wednesday. Daniel was scratching his head, "why take blood if the results are inconclusive????!!!!" My only guess is that it's a required step in the protocol? Whatever. I just want to know that my little guy is healthy, and get him to a point where we aren't dealing with puke ALL THE TIME!

Rebecca got her first quarter end report card last week, and she's on the A/B Honor roll, and if it weren't for Science (which she says is REALLY HARD), it would have been "A" honor roll. She's taking her education seriously, and I'm very proud of her.

Daniel is still unemployed, and his unemployment will be running out in about a month. I'm looking for full time work, one of us HAS to bring in something to live on, we have no savings. Hopefully the economy will turn around soon so that construction will start up again, so HE can work. Wish me luck!!

That's about it for now.

Hugs to all.

Are you Kiddin' Me???

I'm so disgusted with myself and my ability to figure out my little boy I could just cry. He's 13 and a half months old, and been throwing up since July!!! His "reflux" started about the time he started his thyroid medicine, and I automatically assumed it was the meds. Back and forth on the phone with the endocrinologist who insisted it was not the meds, but humored me and switched brands to prove to me that it wasnt. Well, he was right. It didn't matter which thyroid med we used, PJ continued to throw up. It didn't seem to ever really bother him, but man what a mess! Sometimes a few minutes after a bottle, sometimes a few hours. Never any pattern. Usually liquid, but every now and then some consistency after a meal, as he eats pasta and other easy to manage foods. The pediatrician put him on Zantac. It did nothing. So then she put him on Prevacid. This really didn't help, either, so then she put him on Prilosec. Really not much difference, if any at all. He has an appointment late in November with a ped.G.I, but in the mean time, what do I do???? Ok, so, he finally runs out of formula, and last week I switch him to whole milk. I'm looking forward to seeing some improvement, as I've heard this can help. After a day on whole milk, the throw up changes consistency and odor. It becomes cottage cheese in his tummy, and comes up stinkin'! At this point, I've waited for him to become more mobile and upright, understanding that this will help sometimes, It didn't. Then I wait to change him to whole milk, understanding that this sometimes helps. It didn't. I went to the store and bought a half gallon of Silk Soy (vanilla) and started him on it yesterday. He's had a few small spit ups, maybe what's normal for a 13 month old, but NOTHING like what has been happening for the past 4 month. ARE YOU KIDDING ME? My son acquired a problem with milk? He wasn't born with it, which never helped me in my search to finding the problem. Oh I'm such a GOON. Why didn't I try changing up what was going in before?

I'm pleased to be able to say he'll probably start putting on weight, and I imagine he feels better.

Now if I could just get him to sleep through the night. He's had me up 2 or 3 times a night for the past week.

Update to September 20th's entry

Make an on-line slide show at www.OneTrueMedia.com

a cool giveaway

Hi everyone, I'm notifying all of this cool giveaway, to increase my chance of winning. Renee, over at her blog (my special ks) click here, is having a giveaway in celebration of her blogoversary. Go check it out!!

Wow, they like me, they really like me.

Kim, Mattie's mommy sent me this award. Thanks so much! How exciting!

According to the rules for the award, I have to pick 7 people to share this award with. Here are my seven people:

Dan Drinker
Shelley, over at household six
Meredith, at Cornish Adoption Journey
Kristen, at Faulkner Family
Dave, at Chewing the Fat (I adore you, Dave!)
Cory This woman, is an angel, I love her!
Shea

This is what you do to accept the award :-)
1. The winner can (and should, really) put the logo on his/her blog
2. The winner must link to the person from whom they received their award.
3. The winner must nominate at least 7 other blogs for an award.
4. The winner must place links to those blogs on their own blog.
5. The winner must leave a message on the blogs of the people they’ve nominated.

umm, errr, and ahh, hmmm

Hi! Just a few things of minor significance, or maybe no significance at all...

1. family portraits

Tomorrow we're going to have our FIRST EVER family portraits done at Olan Mills. Daniel and I have been married since March, 2001 and we have never had our pictures done. Rebecca hasn't had her's done since she was maybe 2. (School pics, yes) I did have PJ's done at about 5 or 6 months, (once) but they weren't the best. I won't likely have any to post for a few weeks, and that's if I get them on disc, which I guess depends on how much they want for that, because I don't have a scanner, so I don't even know if I'll be able to share them here. I hope they turn out well.

2. Poop and vomit

(LOL) Don't we all blog about poop at one time or another? PJ is on miralax once a day. But, since starting the prevacid, his poops got looser than normal and so I backed off. Well, he's gone 2 days without a poop, even though I gave him miralax both days, and I'm concerned he'll wait till we get to the photographer to have a blowout. If no poop before, I'll pick up suppositories while at Kmart tomorrow. He's still throwing up, too, and gaining weight very slowly now, because of the onset of vomiting, for about the last 2 months. The pediatrician doesn't seem to know quite what else to do, the upper GI results seemed pretty normal. I asked for a Pediatric Gastroenterologist referral, and was given an appointment for November 21. I don't know what else to ask for, so I guess I'll just wait it out... Any thoughts?

3. Jobs

Neither of us have one yet. Daniel DID get approved for unemployment, so we're making it (barely) and I'm looking now too. Gosh this economy sucks.

4. Church

Daniel and I have not ever belonged to a church. Today I went to a church who was having a fair for special needs children. This church has a nursery/sunday school program that they say is SN equipped. I'm thinking about checking it out. Certainly won't hurt PJ or me to have a little Jesus in our lives, and who knows, maybe Daniel will join in. Rebecca goes to church with my mom, and isn't interested in going with me to this other church, I guess she feels that her grandma's church is her church home, and I certainly don't want to mess that up, so won't make any demands that she switch. While at the fair, PJ got a little sunburn on his widdew nose, should make for a cute photo tomorrow. :o) Also, we met probably 5 or 6 local families with kids like PJ. That makes me happy.

I guess that's about it for now. Thanks for reading along.

One Year Check Up Stats

PJ had his check up today, and one of however many shots. We decided to break them up, he'll get one a month for the next few months. Today was Polio. Next month he'll get Hep C, and the flu shot. We're still waiting for word from medicaid about the rsv shot. He got it last year, but to be honest, he's been so healthy, I wouldn't be surprised if they denied it this time around. We'll see.

He's doing very well, still growing, although the weight gain has slowed significantly (this probably because of all the throwing up - which is still happening, even on both prevacid AND zantac.)

Today he weighed in at 20 lbs, 1 oz. On 6/28 he was 19 lbs.
He is now 27.25 inches, so in one year he's grown 10.25 inches. He's still a shorty, but his weight is height appropriate.

He is scheduled to see a Ped.GI, but not until November. His regular Ped is trying to get him an appt sooner, but only if there's a cancellation will we get one.

Tomorrow a new ENT office, and another hearing test, hopefully this guy can see into PJ's ears, because the last one could not.

PJ crawls all over the place, we'll be getting a gate for the kitchen, and have to close all the doors to keep him in view. He pulls to standing and does some side-stepping. He's starting to take an interest in TV (Noggin) to be exact, he loves "Jack's Big Music Show" That's when he gets his jumperoo time now, when we switch the tv on for him. He jumps to the music.

The Ped started making noises about weaning him off the bottle. I know he's not ready yet though, I'm not going to push that on him until he's a little more adept at managing the sippy cup or the straw cup. We practice with one or the other of them daily, but he needs too much help with them to toss the bottle, besides, bottle time is cuddle time and also it's how he goes to sleep. I promise, that when his top teeth start to make an appearance, I'll work on weaning him off the bottle.

Still unemployed, both of us.

I guess that's it from here for now, feel free to ask if I've left something off.

PJ's first birthday

In attendance were my 3 grands, Hailey, Azariah and CJ, My daughters Danyse and Rebecca, Calvin, his cousin Reggie, my mom, Daniel, myself, and of course, the wonderful, beautiful, spectacular cake eatin' PJ!!

Make an on-line slide show at www.OneTrueMedia.com

Rebecca's gift to me

She wrote me a poem. Here it is, verbatim:

Happy Birthday!

I got thinking about what I was going to get you, and thought if I was going to get you anything that it should be touching.

Poem
When I'm blue
I come to you
You always know
just what to do
You're there when I'm sad
or even when I'm mad
and for that you make me glad
It's obviously true
that we're not the perfect two
and for that I love you
I thank you for what you give me
and today I thank you for your birth
because without you my life would be hurt

I LOVE YOU

From Becca
To Mommy

Isn't she just amazing? I love this kid!

Seven Days equals Three Years

The title? Oh, right. It means that we have 3 birthdays in our house in 1 weeks' time. Rebecca, the 5th, me, the 10th, and PJ the 12th. Crazy huh?


Yesterday was Rebecca's 12th birthday. She knew in advance that money is tight these days and her expectations weren't big. Grandma came over and we had cupcakes and ice cream. She got a few presents from Grandma, and then we gave her our gift. I started by telling her that I hoped she wasn't disappointed....


And of course she wasn't!



She had told me months ago that she wanted a DS from nintendo and recently I told her that she wouldn't be getting one, not because she doesn't deserve it, but because we couldn't afford it. She's so understanding, I don't think it was really bothering her that she wouldn't be getting one, but it was bothering me. She is such a huge help with PJ, and loving school and doing well. I wanted her to know my level of appreciation. And I know, monetary gifts and valuable items aren't necessarily the way to show appreciation, but hey, we both wanted to do this for her.

She's gone missing ever since. LOL. In her room playing, playing. But still happy to come out and help me when I ask her to. She's spending the night at Grandma's tonight, to go to Sunday school with her tomorrow.

This guy needs his first haircut!!




And will be getting one next week (probably before his first birthday, but just a few days) and I'll try to remember to get pictures, and I hope he does well. (too much to ask for a first haircut?)

I wouldn't' mind a haircut myself for my birthday, and maybe I'll actually get one. Not sure.

PJ got a new (to us) big boy car seat, and we set it up and drove with him in it today for the first time and he was SOOO happy. I forgot the camera, we were busy running errands, so I'll try to remember next time we go out - he loves his big boy car seat - facing front and looking around and eating his toes and clapping hands and feet. Happy happy happy.

So that, my friends, is why in my house one week equals 3 years.

Labor Day

Well, PJ seems to be feeling better. I don't know what the deal was with the temperature, but he didn't wake up with one this morning, and he had a really good day. He did get a little warm this afternoon, but just a little, and I gave him my new friend Motrin, and he was fantastic after that. It looks like the prevacid is really doing it's job, and then some - he had a bit of diarrhea today, so now I'm wondering if I should stop adding the miralax to his morning bottle to combat constipation... I might lay off the miralax tomorrow, and see if we get regularity anyway, not sure. The pediatrician called again today to check on him, and said she'd call again tomorrow, so I'll ask her what she thinks about the prevacid and the miralax. We had talked about blood tests, but she wanted to wait a few days to see if whatever was causing the fever would manifest in something else, since it was new and didn't want to have to draw blood more than once. Anyway, knowing our fear("our" being collective, as in all parents with kids who have DS) she was ready to order the CBC if I pushed it, but I didn't. I know better now, and I will if it comes back. He's supposed to have blood drawn 1st week of October, to check his thyroid, so I would like to be able to wait, for his sake.

Twice a year a local church holds a childrens consignment sale. I've registered as a seller and have a bunch of stuff to price before thursday, when I have to deliver and set up. PJ has a lot of stuff that doesn't fit him! Mom's coming over tomorrow to help me get thru it. Only the fall/winter stuff will go at this time. Hopefully we'll make a little to be able to get him a new car seat. He's really over the rear-facing-laying-down-can't-see-anything infant car seat.

Got rid of the gray today, in an attempt to look younger for interviewing. LOL. Went a shade lighter, and of course, my brunette Rebecca doesn't like it, I think she prefers me to have a darker brown hair so that we look like we're related. PJ has a different therapy tomorrow, wednesday and thursday this week, plus a check up at WIC on Wednesday, Friday is Becca's birthday (oh God, I'm so not ready) and then NEXT Friday is PJ'S birthday! (mine is Wednesday, in between the two kids) So, lots going on, but without an income, it's going to be hard to spoil my babies.
*sigh*

Oh, and one more thing (since I'm ranting and wining), what's up with NOBODY but my mom donating towards the buddy walk????!!! I emailed EVERYONE, plus posted a bulletin on myspace. Is it because it's not looking for a cure? Isn't it enough that the organization they donate to will make life a little better for our kids?

OK.
Peace out.

Sunday, August 31, 2008

Hi all.

PJ slept thru the night, but woke up at 4am. He had a temp. of 101.6, high, but not as high as yesterday's spike of 102.6. So, I gave him some tylenol, his prevacid with a snack and let him play, which he did for a while. By 6 he was ready for a bottle and to go back to sleep. He woke at 8:30am, fever free. yay. He was good all day, happy, playing, and best of all, he did not throw up!! After yesterday's post, PJ's pediatrician called me to see how he was doing. I love how concerned she is, and on top of his case she's staying... It's not even her weekend to be on call.

She called again this morning, and again, a few minutes ago. Unfortunately, I had to report that although he went fever free all day, it returned this afternoon around 3pm. Went and bought motrin, and gave that to him before he fell asleep. (around 6:30)

I expect we'll be up really early again tomorrow. He still is not displaying any cold symptoms, which I relayed, so she says she'll order blood tests tomorrow if he's still feverish. What causes a fever to come and go? Is it normal? I don't know, that's why I'm asking YOU. lol.

Mom had us over for dinner, she got the urge to actually COOK. It was terrific! Pot roast, mashed potatoes and gravy (PJ loved that) fresh green beans cooked with ham bits for flavoring! YUM. I ate too much and got FULL, only to find out she had chocolate pie for dessert. ugh. I ate some of that too. haha. PJ loved it!! He did start throwing up again late in the day, but much smaller amounts, and after the fever came back. I'm scratching my head about him. Hoping it's nothing, but worried that it's something. Pray for him, will you?

I'll update again tomorrow sometime. Thanks for checking in!

My little dude is not feeling well :o(

Well, and other stuff.

I'm waiting for a call back from the nurses line. PJ actually went to the ped's office this am, he had run a low grade fever yesterday, managed by Tylenol. Was cranky, wouldn't nap, then decided that from about 10pm to 2am he was ready to play!! Wow. Anyway, he woke up feverish again this am, and so I called the Ped's and they had me bring him in. He was feeling good when we went in, so we talked about his vomiting, and that the zantac was not helping at all in that regard, that it's been over a month of it and now he's lost a total of 10 oz. Again, not a great big huge amount of weight, but still, he's going the wrong direction, and eventually, it's going to become a problem. She upgraded him to prevacid 1/2 tab once a day. I'll start him on the prevacid tomorrow. His ears look good, a little redness in his nasal cavities, so maybe he's getting a cold. OK, I'll buy that. So now, it's almost 4pm, he's starting to feel hot again, so I give him some Tylenol, then a few minutes later Daniel remarks how hot he feels. So, after trying the ear scan thermometer and getting something different 5 times, I pulled out the old fashioned thermometer lubed it up and took the rectal temp, 102.6. I called the nurses line.

OK, so, she just called me back, and spoke to the Dr. I'm to keep giving him tylenol, and fluids, and if the temp rises, a luke-warm bath. If none of that works, a trip to the ER will be in order. She thinks it's the onset of a cold.

He's pretty unhappy, but not pulling his ears, and really not snotty or cold symptoms, except for his spit up, it's gotten slimy. (sorry for that)

OK - the other stuff: Daniel is still looking for a job in a market that hasn't got any. I've decided to throw my hat in the ring. One of us has to work. I don't want it to be me, but looks like PJ might have a stay at home dad for a time. Basically it's down to whoever finds work first..

Becca's first week of middle school was good and she seems to like all of her classes. Her check up today revealed great hearing, 20-20 vision, a perfect spine, good weight, glucose and bp levels. Yay.

I think that about sums us up for now.

First Day of Middle School

She's growing up! My baby girl, about to be 12 years old, started 6th grade today. She's excited to start this new phase, summer was a bit of a bore for her, I'm sorry to say. PJ has loved having her home for the summer, and he's going to miss her. I'm going to miss her too! PJ is becoming more demanding of attention, playing by himself in the morning, happy, but wanting someone to play with more and more. She gives me breaks during the day, and we're really going to miss having big sissy around.

It'll be fun helping with homework again, she's taking Spanish, and that should be fun. I speak it fluently, but never taught her, so I can definitely help with that, although I'm probably going to be useless with algebra, maybe she can teach me!

Here she is, my big girl.





Rebecca, you look mad, let's try it again.






Ok, a little better, I guess it's hard getting up at 6 am for the first time in a few months.







THERE'S my class clown! I hope you have a good day, Becca, and make new friends this year, and study hard, and remember how proud I am of you.

Made a new friend today IRL

(In Real Life)

A sweet lady, Kristen, who I met on the internet before PJ was born, decided that almost one year was long enough to wait to meet up IRL. She made the two plus hour trip to Raleigh and we met at a park so the kids could have a bit of fun. Daniel and Becca came along, so we all got to meet Kristen and Ethan. He is so handsome! He loved the swing and the train ride, he'd laugh when his mom would tell me something about him, then we'd laugh, and he'd laugh some more. He gave high fives to Becca and Daniel. PJ was super tired, he missed his afternoon nap and decided to stay awake the whole time, so he wasn't as wonderfully happy as he can be, but he had a good time and wasn't one of "those" children, he was actually pretty good considering how tired he was.

One thing that was funny was there was a couple there, grandparents to 20 month old triplets, 2 boys and a girl... They were on their way out of the park, walking towards the parking lot, when one of the boys took a shine to Becca, he wrapped himself around her leg, put his hands up to her for her to pick him up, and almost cried when he had to leave her. It was really a freaky kind of experience. It was as if he knew her, which of course, he did not. I told Becca it was as if her knew her in a different life, and Kristen called her "The Baby Whisperer" It just confirmed to me that Rebecca's calling is to work with children in some capacity, and she's leaning toward therapist for special needs young'ns. She's terrific. We took a million photos, but our camera has such a slow shutter speed that only a few came out not blurry, so here's the best of them from our first K & E meet. I hope we get to do it again, soon.

Swallow study and upper G.I.

The instructions were to not give PJ anything for 3 hours prior to our 10 am appt. Since he generally wakes up between 5am and 6am and I generally give him his thyroid medicine along with a snack, and then breakfast around 8am. Well, today I gave him his breakfast at 6:45, so he'd be full as close to 7am as possible. We got to the hospital a few minutes before 10, but the registration desk told me I was to register him at the rehab desk. huh? OK, so we scoot over to the rehab dept, (I'm tired by this time because there's construction going on at the hospital, so we parked at the wrong end) and wait to register him. "They" whoever they are, forgot to tell rehab that we were to register him there, so there was the 20 minute phone call back and forth to registration before we actually got to register... uh. So, they took us over to radiology, where we waited, and waited, and waited until NEARLY NOON... and poor PJ was inconsolable by this time, so hungry, and mad because nobody was feeding him. Well, they put strawberry kwik in a bottle of barium, laid him on the xray table and he chugged away. The whole two tests took less than 20 minutes once we got started, and here's what they told me. That his aspiration is minimal and infrequent, no need to change anything about what he gets, except maybe to keep him on a slow flow nipple, and to have his head elevated. Yep. Do those already. They noted very little reflux, but of course, in 20 minutes they wouldn't see it with him. So, tomorrow I'm calling his pediatrician and asking for a Ped G.I. referral. (Thanks, kris10)I also am stopping the thyroid medicine (on the ok from the endocrinologist) for a week to see if that is in fact what is causing the vomiting. I also need to call the endo and let him know that I finally decided to quit the meds for a week to see if that will stop the vomiting. On an up note, I get to meet one of our kids tomorrow, and of course, his super cool mom who is driving an extra hour and a half just to meet us! Yay! I look forward to meeting Kristen and Ethan! Woooo hooooo.

I'm having A dinner party!

I've seen this on several of the blogs I try to be loyal to, and thought it was a great Idea.


Here are the rules courtesy of Barking Mad



You are going to have a dinner party! Oh yes you are. Well OK, not a REAL dinner party, but hey, if you're so inclined, more power to ya. Anyhow, you're having this swell dinner party and you are going to invite ten bloggers.


Create a post telling us who you are inviting and what about that person's writing makes you think they'd be an intriguing/funny/interesting person to share a meal with. What have you learned about these people through reading their blogs and what would you hope to learn about them through breaking bread with them?

Please Go to Barking Mad if you do this and sign the Mr. Linky saying you participated.

Here's my list of invitees:

Dan Drinker and his brother Will. Will is making a documentary of his brother Dan's life, and accomplishing so many things with this. He's spending a lot of time with his brother. He's teaching. He's advocating. He's honing his craft. He's creating memories. He's sharing and uplifting the spirits of new parents like me by showing me it's all gonna be fine. Dan's last name is Drinker. My son, also named Dan's (goes by PJ) last name is Barr. Just seems right that I share mine with his.


My online friend Renee at Life With My Special K's. This woman completely amazes me, 4 kids, medical issues at every turn, a husband overseas and she just really keeps it all together. I, being an uprooted California girl too, would really like to meet her IRL, maybe glean some of her "togetherness" from her. Also, knowing that PJ would be born with DS in advance, it was the first thing I looked for at his birth, and I remember thinking - "he looks so much like Kennedy". I should know them IRL, right?


Meredith, and her crew over at Cornish Adoption Journey. I learned of her adventures and become emotionally and spiritually invested in her oldest adopted daughter, Emma. I've read along since before the actual adoption, and cheered for the whole family, but actually PRAYED for Emma during a very difficult time of heart failure and open heart surgery that had a better chance of killing her than healing her. She's thriving today, and I thank God.


Melanie of Baeten Family. Her little man Logan is SOOO cute, and I think PJ looks a good deal like him. I love seeing updated blogs about his progress.


My friend E, or Eileen. This woman fell in love with PJ before he was even born! And she supported us and cheered for us and even sent gifts! (Thanks again, E, for the bouncy seat!) She's a great friend who I want to meet IRL, and hope to, one day.

Shelley over at Husehold 6.
She's inspirational. Another military wife, who is strong and kind and together. She and her husband went to the ends of the earth to collect her kids, and I admire them.


Kacey at Ella Grace with the pretty face. We have to meet. PJ and Ella Grace are gonna fall in love one day. My only issue is, who moves where? Them to NC? Or us to WA? LOL.


Leah, of The Garden of Eagan,. I am encouraged by Leah, who has a life, AND an 11 year old girl. I love that she's discovering her adventurous side, acting on it, and sharing her wonderful times with us.


Charissa, another mom who needed one more, special child, and went and found her. These mom's make my heart sing. So much faith.


Dave atChewing the Fat. I recently was pointed in the direction of his blog, and am, in fact, still catching up. I find him to be very well spoken, a great advocate, and very thought provoking.

There are many others that I would invite, if I were really having this party, and I could somehow get us all in the same location, All of the blogs I keep up with have really good people writing them. I appreciate all of you, thanks for being my teachers.

Preparing for Buddy Walk

The donate button is now on my blog.
It's also on my myspace
click here.
This will be our very first year participating in Buddy Walk, and we hope that everyone will help to make it successful.

The funds that we raise go to help our local area DS Association. Triangle Down Syndrome Network


Since this is our first time, I'm sure there's plenty of pointers from those more experienced. Please know that all advice is WELCOME HERE.

Happy 11 months, baby boy!

OK. Got some bath time photos, he's enjoying the big tub, and can splash all he wants without making too much of a mess. I bought one of those ring things with the suction cups, but it wont stick in either tub, I guess because the tub bottoms are dimpled?

I had the pediatric endo call in a generic rx for the thyroid meds and we started that today, hopefully will see a difference in throwing up (as in less in qty and frequency)

For those of you my friends who pray, please do, for my husband to find a job and fast. He was laid off today, the company is a small time financially inept and irresponsible one, and had to let go more than one today, and my DH was among them. I would appreciate prayers, positive energy, whatever ya got.

Here and there

So, I decided I'm going to try to update this blog on a more regular basis, because maybe mundane is not boring for some, and maybe you (the reader) take some pleasure in knowing what's going on in our life. And who am I to keep that from you?

Let's see... Today, Hailey and Azariah, my 2 granddaughters are spending the night.



I went and picked up pizzas for dinner (5.55 ea at dominos).

PJ is great, except he's still having days where the zantac doesn't seem to work (today being one of those days) He throws up. Last night he did the "suck on the bottle then arch the back and cry" thing. He has a swallow study and an upper GI later this month, so once that's done we'll know which way to go with treatment.

He still has only one tooth, is still crawling, sort of, on one knee and on one foot. Still very unsteady. Pulling to a stand like a champ. spitting rasberries, not so cute anymore. now, in addition to clapping, he puts his hands in the air waiting for someone to say "so big". It's really cute because his little arms are so short, they barely come to the top of his head. I'll try to get a picture of that. He's starting to sing a little bit, I've had to guess that's what it is, because it sounds like aaaaaaaaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhhh ahhhhhhhhhhhhhhhhhhhhhhhhhhh aaaaaaaaaaaaaaaahhhhhhhhhhhhhhhh. And every now and then he jumps up and down as if to dance. He understands container play, dumping, removing, and putting in. He can push the button on his exersaucer to get Elmo to sing to him (cause and effect) and he's getting a little freer with his laugh, which is really only a chuckle, but I'll take it.

Becca's getting ready for middle school, starts later this month. Daniel is still working, and I'm still at home. Mom comes a few times a week, and runs us to our dr appts and grocery trips. She's really great. (Thanks Mom!!)




So, that's it from here for now. We're happy, we have love, and good health.

hugs!

tid bits

Well, let's see. PJ's very first tooth finally made it's appearance a few days ago. He's 10 months old. A little late, but they say EVERYTHING on our babies has the opportunity to be delayed.

He's pulling up to stand, and scoot/crawling, or trying anyway. He started clapping his hands about two weeks ago.

The meds they started him on for his thyroid is making him sick to his stomach, and otherwise not feeling well. He gets to see the Dr. for that on Tuesday, so we'll see if any adjustments can be made. His regular pediatrician prescribed him zantac (liquid form) to help with the spitting up, it's been an ongoing problem, but has been exacerbated by this newest med. Poor baby. Anyway, I think that's about it for now. Thanks for checking in.

Hypothyroidism

Apparently it's quite common in individuals with Down syndrome. I'm just learning about it now, so any explanation you get here is is likely sketchy and vague.

Back in March, PJ's regular pediatrician ordered a blood draw to check his thyroid, as is the norm for our kids. They have to check every so often. At that time, his numbers were at the high end of "normal", just a "keep an eye on" thing.

Last week, PJ finally got to go to the DS clinic, at Duke Medical Center (one of NC's two Top 10 Hospitals in the country) where they took some more blood. Yesterday, I got an email advising me of an appointment with a Pediatric Endocrinologist for 7/29/08. So, I called to ask what it was for. I was told it was his thyroid, but the appointment secretary I spoke with didn't have any more info than that. Next I called the regular ped's to get his numbers from March. His TSH was 5.56, and his T4 was 1. Ok, I really don't still much understand what this means, but shortly after that, the Ped.Endo office called to tell me that PJ needs to be taking a daily medicine, starting immediately, so I went to pick up the RX from the local pharmacy today, and will start giving him his meds tomorrow (has to be on an empty stomach)The person who called to advise me of the need for meds told me that his TSD was now at 10.29, and T4 was at 1.15. I still don't know what this means, but I can see that something has gone way up. (way being a relative term, since I don't know if that's a large increase or not) This condition will be treated for life, but appears to be a simple fix. I'll know more after the 29th, and I hope that the only changes I see in him after being on the meds are positive, maybe growing a little? He's a real shorty. Maybe bowel regulating? Maybe sleeping better? IDK.

On other stuff about my boy, his PT is working with him on cruising the couch, and crawling. I "caught" him several times today attempting the "crawl" He's 10 months old tomorrow. He's eaten a few things with consistency, Gerber makes a snack called "puffs" about the size of a cheerio, made with real fruit, and it kind of breaks apart on first bite, hence the name "puffs" - he's hooked, and is even picking them up off his tray and getting them into his mouth (raking, not pinching - but still pretty cool) He had some lo mein the other day when mom took Becca, PJ and me to lunch at a chinese restaurant and totally dug that. Still no teeth, but I'm not worried, I've been told and have read that teeth are slow in coming very often in our babies. So, that's about it for now, just two more months till his first birthday, the time goes by SO SO SO fast. We went to the park last week, here he is, enjoying the swing.

Explosion of new abilities

Yesterday was PJ's 9 month check up. I got to go over all that he can do with his Dr. It seems that his gross motor has just exploded, every day something new just about. His speech (vocal sounds) is coming right along, too. I think soon it will be time to get him OT, maybe I need to talk to his services coordinator and see when we can do this.

Monday he started sitting up on his own, and now, Saturday, he's a pro at it. Yesterday he started getting up on hands and knees and rocking back and forth. He wants to crawl sooooo bad, but his coordination needs work. he ends up face planting during the first step of an attempted crawl. I'm glad he's a tough little dude. He also is trying to pull up to standing, as of yesterday; hence the blog title - Something just seems to have clicked for him.

His Dr. also found a little indentation on the front bottom gum, where she is sure a tooth is. It may still be awhile, but at least I know to look out for it.

His naps are finally falling into place, and he takes 2 a day, at least one hour each, sometimes longer. (yay!)

Stats from check up:

Weight - 19 pounds
Length - 25-1/2 inches
Head Circ. - 18-1/4 inches

9 - 1 - 4

9 months, 1 week, 4 days.

Approximately 2 months after he began sitting up when placed in that position, Little PJ is now getting himself to sitting. He was sitting up in his crib this morning when I went to get him from his first nap, and has done it several times since. I'm so happy for him, and he's pretty happy for himself. Grinning from ear to ear with all the applause and cheers directed at him today. My husband will lament that we don't own a video camera, as do I. If I had one, you'd all see it too! *sigh*

yay PJ, you absolutely rock my world.

My Little Man is 9 Months Old!

Well, he will be on Thursday (the 12th) It goes by so quickly.

Here's a list of things he does now

He pivots, mostly to the left. In fact, he'll turn a full circle most times to avoid going to the right, even when whatever he wants is closer to his right.

He rolls, front to back, back to front, all over the place.

He's starting to try out getting on his knees and elbows. Arms are still a bit week for knees and hands.

He's grabbing and mouthing EVERYTHING. He shakes rattles, tears up his playroom. Jumps up and down on laps, and in his jumperoo.

He gives big ol' wet kisses, when begged.

He eats breakfast, lunch and dinner. He's still taking a bottle, and has no interest in holding it himself, so we haven't even bothered with trying a straw cup yet.

He gives huge smiles, and every once in a while he chuckles, but I'm still waiting for the big belly shaking laughs. - Part of this laugh thing is that he seems to think that a big hardy laugh is crying, and so when we laugh, he gets confused, like he's made us cry. I know he'll get it eventually.

He says da da da, bla bla bla, dla dla dla, and every now and again - ma ma ma, but honestly, I'm pretty sure it's just practice noises at this point.

He blows raspberries, and he really enjoys them with a mouth full of baby food. Usually that's when I've decided he's had enough.

Naps are still hit and miss, mostly miss. Bed time is any where from 7pm to 8pm and he sleeps till 5:30 or 6am. Here's the latest pics of him..

8 months old already!!

I just can't even keep up with all he does and how fast it's all going!

Bath time

yes, he can

7 months

PJ is 7 months and 5 days old today. It's going by so quickly, my head is in a constant state of spin. As of 2 weeks ago, we're in his 3rd residence. We found a mobile home for rent about 3 miles from mom's house. It's only 2 years old, and so it's in excellent condition. Our landlords live right next door and they are good people. Country people. The back yard is HUGE, with a big ol' oak tree just before the woods line with a rope and plank swing, which Becca and the granddaughters have already decided is really fun. The landlords keep bird, squirrel and deer feeders going, and so wild life abounds! There's also resident wild turkey hens, which scared the dickens outta me first time I saw them. We're happy to be "home". The unpacking and picture hanging is almost complete. Life is good. We're content.

Updates on a few things

Sorry for the delay in between updates, there’s always something to update about, but hardly seems to be the time to sit and get it done.

Thyroid: PJ’s blood test was done last week, (which he did very well at, I should add) All within normal range. I don’t have the numbers, but the Ped’s office called and told me he’s ok. yay.

Rolling: Yes, he’s rolling over, he can roll from front to back, but prefers back to front, and always to his right. He’s been consistently rolling over now for about 2 weeks, and the other night, rolled in his sleep. It woke us up, because he sleeps in his pack-n-play right now, in our room and it was too difficult to roll back over, and his grunting woke us up.

Space: He’s sleeping in his pack-n-play because there’s not enough room in our room at my mom’s for his crib, which is in storage, along with most everything else we own, since we moved here end of October, 2007. We finally found a house to rent. PJ will have his own room, Becca, of course will have her own room. It’s only about 2 or 3 miles from my mom’s. It’s a very nice house. We lucked out. The landlords are a very nice couple, in their mid 60’s, who live right next door. They are really nice and seemed to like us, and we’re going over this evening to give them a deposit, and if all goes like it’s supposed to, we’ll be moving this weekend. The only downside is even though it’s close, it’s out of the elementary school’s zone that Rebecca goes to, so we’ll be delaying notifying the school of the move until end of school year. Sweet deal that it is in the correct zone for the correct Middle school, so all will be fine after May of this year. I’m going to continue being a stay at home mom for now, please keep Daniel in your thoughts, it’s very hard on him.

More to come, when there’s more to tell.
hugs to all!!

Story Time

6 months old

He doesn't always look so sleepy, it's the flash on the camera. He blinks! almost every time. It seems that this time in his life has him becoming more aware, more alert, and enjoying his jumperoo and his exersaucer. Finally. I've been putting him in them for the last 2 months or so, only to take him out right away because he doesn't want to be there. Over the past week or two, he's actually starting to like them, giving me a wonderful opportunity to put something ELSE in my arms. Like laundry, or vacuum, or nothing if I so choose. His floor time doesn't seem like such a waste anymore, either. He'll lift up really well when on his tummy, actually scooting around in a circle over time. (accidental, I think, but still...) And from his back, he turns to his side for a better view of what's around. Fine motor still a little sluggish.. even though he wants to put a toy in his mouth, he usually ends up dragging it across his face until he finds his mouth, only to discover it's his hand going in, not the toy. I know he'll get there, and he's teaching me to be a more patient person.

A trip to the ENT last week was totally fruitless. His little ears are soooo tiny, that they were unable to see in them, or get a hearing test done. I know he can hear, I don't fear hearing loss, but I guess it's something our babies have issues with, and the clinic wanted to know. We'll go back in 3 months to try again. Next week is his 6 months check up and blood draw for thyroid. He still has a clogged tear duct, not sure when we deal with that. It's not horrible, he's just always got one mildly goopy eye. That's it from here for now. More updates soon!!