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!!

echocardiogram

Well, PJ had his repeat echo today, out at the Children's Health Center at Duke Hospital. (It's where the DS clinic is) The Dr. was very nice. He didn't have the pictures from PJ's original echo that was done in Nashville, TN at the age of 2 weeks. In that first echo, we became aware of an ASD (atrial septal defect) measuring about 5mm in length. At that time, the Dr. was not too concerned, he wanted to repeat the echo after 3 months because he felt confident it would close up on it's own. Well, it's not gone completely, but it has closed up quite a bit, leaving only two small pin hole sized holes, which, the Dr. says, would be more trouble to close than to just leave alone, and that he doesn't need to see us again for 3 years. So, that's good. One concern he DID bring up is PJ's growth pattern. Apparently, on the DS growth chart, PJ places in slightly OVER the 50th percentile for weight, but UNDER the 5th percentile for length. He's a short, fat little boy. Well, if you've ever met his parents, you'd know why. But if that's not the reason why, then it could be his thyroid. We have his 6 month checkup scheduled for later this month, at which time they'll draw blood to test his thryroid functions. I'll let you know, when I know. 6 more days, and PJ will be 6 months old!

5 months old today

5 months old today
Current mood: adored

Hello everyone. I wanted to post a commemoration to PJ's 5 month birthday. He's doing very well. He smiles a lot, even has decided his grandma is worthy of smiles, which pleases her a great deal. He's eating cereal and baby food now, the only thing he really doesn't like is peas, but if you mix in apple sauce, he'll even eat that! He has turned over a couple of times, probably by accident, since he wont do it repetitively. He loves chewing on his hands, or my hands, or his grandma's chin, and has a VERY strong bite! Thankfully, no teeth popping thru yet. He's even made himself cry by biting down on his own fingers so hard. Strong jaws! He ooohs and aaahs, and if he's mad, he grunts and sounds petulant and demanding. He barely naps, but sleeps all night, from about 8pm to about 6 am. His developmental therapy has been increased from once a month to weekly starting this week, so we'll see how well he tolerates all the additional floor time. He is scheduled for an evaluation later this month, so that a few specialists can see him and recommend what other therapies he might need, ie speech, physical, occupational.

He's grown soo much. When first born, all of his newborn clothes were too big. If it wasn't preemie, it was huge. He's gone from those, to newborn, to 0-3 months and now fits nicely in most 3 months, or 3-6 months. He's made it up to a size 2 diaper. His hair is returning, and I just love him to pieces! So, that's it from the home front. I hope you all have a nice Valentine's Day!!
Hugs,
Kathy

could it be? another blog about my marvelous son?

could it be? another blog about my marvelous son?
Category: Life

Hi all. Today PJ had his 4 month check up and shots, and even though he's 4 months and 10 days, I figured I'd give you his stats...

He now weighs 13 pounds, 5 ounces. (12th percentile)
He is 22-1/2 inches in length, (5th percentile) the little shorty (although to be fair, he was only 17 inches at birth, so he's grown 5-1/2 inches)
His head is 16-3/4 inches circumference, (50th percentile) yay! his brains are getting bigger!!

Dr. is very pleased with his overall growth and health. he got 4 shots in his widdu wegs today, needless to say, he's doing a lot of whining intermingled with a lot of napping. One of the shots was the synergis shot, which he'll get monthly from now until March, I think - that's the one that protects against RSV. Yay!! With so many other things to worry about, it's nice not to have to worry about that!

A couple of weeks ago, I started him on some vitamins, made specifically for people with DS, because the extra chromosome somehow makes proper absorption of certain vitamins very difficult. The effects of these supplements are to help strengthen immune system, and battle against Alzheimer's. Did you know that over 50% of young adults with Down syndrome get Alzheimer's? One of the added benefits of this supplement is that it supposedly helps learning and memory function. I honestly don't know if it's true, and my giving him the vitamins aren't dependent upon his mental function. It's about keeping him healthy for as long as possible. But, if it does work for that too, then what a bonus, huh? For him to be capable and independant in the future would be simply golden.

Love to all,
Kathy


p.s.
Without intending to, I've become a sort of an advocate for TNI (targeted nutritional intervention) There are 2 companies that make the vitamins, and both will send you a free sample.

http://www.nutrivene.com/

http://www.nutrichem.com/

One is a USA company, and one is Canadian. The Canadian company adds flavor to their compound so that it's more pleasant mixed in with formula or baby food. But the USA one seems to only provide the vitamins that are needed, and nothing that's not. If you have the time, check out the yahoo group, " DSTNI " Dr. Lawrence Leichtman frequents there and he's someone all parents of children with DS should know of.

Four months old

Four months ago today, my little miracle came into the world. He is so sweet and yes, a little spoiled. If I decided today to stop spoiling him and be "tough" with him, he'd still get spoiled by Grandma, Sissy, and Daddy, so what the heck, right? Anyway, I just needed to commemorate this day, and a blog seemed appropriate.

As far as milestones, the one I'd hoped he'd reach by now and hasn't done yet is turning over. So far he just doesn't seem interested.

He grabs for toys that are within reach, including his sisters hair.
He recognizes my voice and my face, and graces me with a big smile. He does this for his daddy, and his big sissy, too. Grandma he's still a little not too sure of, and so far, he's withholding smiles from her.
He kicks and stands supported.
He talks to his sissy (oooooooo) and today he sang with her (again, oooooo)
I started spoon feeding him a week ago, oatmeal. He likes it, and there's enough fiber in it to help keep the constipation away. (yay)

That's it for this update, take care all.
hugs,
kathy

Reflections and forward thoughts

For the new year of 2008
Current mood: contemplative
Category: Life

Wow. I've noticed since becoming a new-old mommy the number of blogs I post has decreased. Today Becca and Daddy are helping me with PJ, so I can take a little more time for myself. One reason I wanted to blog was to wish everybody a happy and safe celebration of "out with the old and in with the new."

My life encountered a whole bunch of changes in 2007.
I found out I was to have a baby. - shocker of the century
I found out my baby was to have down syndrome.
I lost my job.
My husband lost his job.
PJ was born.
We ended up moving away from our home of 4 years.
We moved into my mom's now very crowded house to begin again.

There are at least a dozen more, but you get the drift. I guess the beginning of a new calendar year, for me, doesn't necessarily signify a new beginning. I've had a lot of new beginnings, and not one that I can think of correspond with 01/01 of any given year.

Daniel is working, full-time (almost) since Thanksgiving, so that's good. We're hoping he can find a better paying job, so that I can continue to stay home with PJ. I just don't know what I'll do if my only option is to leave him. It was very hard with Rebecca when she was 7 weeks old, but I'm sure I'll really have a breakdown if I have to do it with PJ - my eyes tear up when I even think about it.

So, I'm still struggling with county, state and federal agencies on PJ's behalf, I've learned a good deal about "the system" but am still a novice, I'm sure. I have a new family, too. They are the parent's and siblings and individuals themselves with down syndrome. It's different than a club, because you voluntarily join a club. It's a family because very few of us asked to be in it. I don't want to make it sound like I'm unhappy in this new family, because I'm not, at all. My new family is huge, and loving, and supportive, and experienced, and educated, and they happily share any and all relevant knowledge. They are always ready with a tissue, a shoulder, or kudos and praise, whichever happens to be appropriate.

So, in closing, I want you all to know that I wish you a wonderful 2008, but that it already started, days ago. I wish for you a flu-free winter, an unexpected visit that brings laughter and rest for your worries; time enough with family, and all the love your hearts can handle, with some spilling over.

Christmas Update

Yesterday was PJ's follow up at the pediatrician's office. I really like those people. Anyway, after all is said and done, his lungs sounded perfectly clear. No need to re-do the x-rays, because he's feeling so good. No fever, great appetite, great color, energetic and happy. He is 14 wks old yesterday, or 3 months and one week. 11 pounds, 8 oz. His appetite is second only to his daddy's. lol.

Rebecca is adjusting to life in North Carolina well, although she misses her friends, and hasn't found a "best friend" like she had in Tennessee. She's doing great in school, and is finally (fingers crossed) outgrowing her tomboy stage, even asked me for some "girly" clothes for Christmas.

Daniel is working full-time. He seems happier here in NC, too. We've only gotten to go visit his family once since being back, but that's because PJ was sick for 3 weeks. I think we'll be going to see them the weekend after Christmas.

My mom has adjusted pretty well to our being here, taking over her house. We try to respect her boundaries, and she has friends that she goes out with, social activities to get her mind off of us, and she loves hanging out with Rebecca. They go places together, to the movies, shopping, etc. Becca loves her grandma, too.

With all the stress of my topsy-turvy life, my skin has decided that it's all-out war, and I cannot get it back to decent looking. It's red, red, red! And SOOOOO dry. Doesn't matter what cleanser I use, or what moisturizer, it's irritated beyond belief. I remember it being this way last time we lived in NC. I need to see a dermatologist, I guess. Maybe now that PJ is better it will calm down some. I'm not sure how I feel about anything, not having the time to look inward. I guess I'm glad we're here, but I really miss Spring Hill, TN, and the friends we made, and were making, the life we had. It sucks having to start over, with medical bills galore, no money, not even for a place of our own. Sorry, I'm whining. Enough of that crap. I am thankful for family. For my beautiful children. For my husband who has been supportive and understanding of my inability to leave PJ in someone else's care and go find a job to help bail us out. I just can't do it. Not yet. He's starting to give us those smiles, you know the ones, the ones that say - "Hey - I know you, and I think you are the best!" Better late than never, right?

Merry Christmas to all, and Happy New Year, too.

Much love from me to you.

Kathy

pneumonia

I thought it was just a cold. I took him to the Dr. last week Thursday and she said it was bronchiolitis, so we started treating him for that (nebulizer). He wasn't any better today, so back we went. She sent us over to the hospital for a chest xray. By day's end she was calling, telling us there was a small amount of pneumonia present, and to go get the new prescription. He's on amoxicillan and prednazone. Daniel is a mess, he doesn't worry about things, he's a "I don't give a f_ _ _" kind of person, normally. I'm just waiting to see how much gray hair he has tomorrow morning. LOL.

I feel certain PJ will be fine, and won't need to be hospitalized, but if you pray, please include him.

Thanks and love to all,
Kathy

my first collage attempt

PJ has been sick for a week. I took him Thursday to the Dr. he has bronchiolitis, an upper respiratory infection. So, he gets a breathing treatment with a nebulizer every 4 hours. And lots of saline drops in his nose, and the bulb syringe (snot sucker). I think he started to feel better about an hour ago. It's been a stressful weekend, with me on the verge of running him to the ER every hour or so.
Phew!

PJ's first 2 months

Make photo slide shows at www.OneTrueMedia.com

10 weeks old, today

LIttle PJ got his first set of shots today.

He was weighed and measured. He's 10 pounds, 4 ounces, and 20-1/2 inches long. This is a gain of 2 lbs, 4 oz, and an increase in length of 1 inch in a period of 4 weeks! He's so chubby now!

These pics were taken within the last day or so. (He's not feeling so hot right now).

update on us

So far, Daniel hasn't been able to land a job, but is at an interview as I write this, and so I hope to be able to update with good news, soon! I've attached some pictures to this just so you can see my beautiful son! We went to Daniel's side of the state this holiday weekend, and introduced little PJ with his Nana, his Poppy, his aunts, uncles, cousins and his Grampa! Naturally, they all think he's beautiful!

6 weeks old, where does it go?

Hello Everyone. Yesterday PJ was 6 weeks old. Today, I took him to his pediatrician, because his sinuses have been plugging up since the beginning, just about, and it's gotten to the point where it's disrupting his sleep, and interfering with his feeding. (poor baby ) Also, his eyes are junky, have been since the beginning, too.

The Dr. ran a thin little tube up each nostril to make sure there were no blockages, and thankfully, there weren't, then with the same teeny tube tried to suction out any mucous that is bothering him, and there really wasnt any. He's just got teeny tiny sinuses, I guess. He screamed throughout this fun time. (Can you say, STRESS?) Any way, unfortunately there's nothing to give him at this young age to relieve his pluggy sinuses. We have noticed, however that it's worse at night, or at naptime, so the Dr. recommended we elevate his head a bit for sleeping, and I put him on my bed, on a pillow, and he's been asleep now for 4 hours and not making that awful snorkeling sound, and not waking with every little sound, as he has been doing, I think for not sleeping well. Of course, I've not figured out how to do this same set up in his bassinette, but I'm working on it.

His tear ducts are clogged. His eyes get goopy. Dr says he'll need to see an eye Dr. but not yet. Probably around 6 months. I just wonder if they'll get better on their own, or if he'll have to have surgery. Same with his sinuses, will they open up? Or will he have to have surgery to fix them?

He's now 19-1/2 inches long, and 8 pounds, exactly! Just like a newborn baby, only he's 6 weeks old. So, in 6 weeks, his total weight gain is 2 pounds, 10 ounces, and in length he's gained 2 and a half inches. Not too shabby, huh?

his eyes

Oh! What they do to me. They see into the very core of me. He understands the profound depth of my love for him. Those little almond shaped eyes, the window not only to his soul, but to my own. He is my heart, outside my body. God how I love this little man.

Down Syndrome Clinic at Vanderbilt Children’s Hospital

Down Syndrome Clinic at Vanderbilt Children’s Hospital
Today was lil' PJ's appointment at the Down Syndrome Clinic, which is held every Thursday. I was so impressed with the level of care that our babies get here in Nashville. We were seen by a Speech Therapist, a Dietician, a Social Worker, a Physical Therapist, a Cardiologist, a Pediatrician and a Psychologist peeked in to say hello also.

PJ had an echocardiogram done (an ultrasound of the heart) and they did find a little bitty leak, which they call an Atrial Septal Defect. The Doctor assured us that his heart is strong, and he is a very healthy boy, and that many babies, of all developments have these, many are never dectected, but because they look so carefully at a down syndrome child's heart because of the high occurance of heart defects, they are often found in our babies. It's only 5mm in measurement, and it can't even be heard as a murmur, and he reassured me that 98 - 99% of cases resolve themselves within a short period of time. He says we'll re-do the echo in 3 months, and it will very likely be gone. If it doesn't go away on it's own, the dr. says that a surgery MAY be performed at around age 2, depending on PJ's overall health, but he really made it sound like that would not be the case.

PJ's weight is up to 6 pounds 10 ounces, so that's a total gain of 1 lb, 3.4 ounces since birth, in 3 weeks and 1 day. His color is good and nobody had any concerns with him overall. The time flew by, it wasnt boring or frustrating and there was no wait.

It was very educational. Oh. We even saw Sheila, the Director of the Down Syndrome Assoc. of Middle TN, who we met at the picnic early in the summer, so she got to see PJ for the first time.

I wonder how other cities compare in caring for our babies?

Hugs and love to all,
Kathy

Bath number 3

Ok, so we had to make sure bath number one and two we weren't going to drown the little wiggle worm, but by bath number three we felt confident enough to get a couple of pictures. He really is squirmy, but seems to like getting his bath.



Thanks!

Welcome to your life, little PJ

Hi everyone. I'm home. I got home Saturday, and my world is upside down. I came home with a lot more stuff than I left with, and even though I am a Virgo, I am very unorganized, so there is stuff everywhere. Mom came 2 days ago, from NC, and will stay for 2 weeks - thank God. Daniel was off work all week last week, except for Monday, same as me, and wont return to work until Wednesday. This is a very good thing, because if I can get him motivated, HE is very organized. Mom is a big help, cooking, cleaning, laundry, errands, etc, just like a housewife. lol. I'm really glad she's here.

So here's what happened... Little PJ was stressed, and had a few days (not consecutive) of listlessness, lethargy, just overall inactivity. Me, being a worry wart, kept 2nd guessing myself as to whether or not I was overreacting and held off going to the hospital. I finally went Wednesday morning, thinking they'd tell me how silly I was, to go home and come back if there were a "real emergency". Well, shame on me - I should've trusted my instincts on being worried days before, because he was having a hard time. Every time I had a contraction, (I was not in labor, just having the occasional contraction) his heart rate would slow down. And he wasn't having any of the normal heart rate spikes of a happy baby, just a slow, steady heart rate. So the doctor decided at 36 weeks, 5 days of gestation that the baby would do much better out rather than in, and that labor was not going to be good for him, and they prepped me for a c-section. Daniel was great, held my hand and talked to me, never peeked around the curtain at the gore on the other side. We heard little PJ's cry together, and shared an eye-locking moment of awe and pure joy. We welcomed him, 3 weeks early, at 17 inches long, 5 pounds, 6.6 ounces. He has a good amount of light brown hair, and eyes are still to be determined. I can say that we all think he looks a lot like his daddy.

I looked, upon first view, for the "downs" in him. Saw it right away, in his eyes. I can say now, 5 days later, I don't see it anymore. I know it's there, and that's fine. I just don't see it. I see the most beautiful baby boy that I have ever seen. I see perfection. I see an angel. I see more love than I have ever been faced with, even having had 2 daughters, whom I dearly love.

I'm bruised and very sore, but starting to feel better. Rebecca cried when she first saw him, saying "oh! He's so beautiful!" She's going to be a great big sister! She's helping out already.

Being early, he's had a few complications with jaundice and body temperature control, but we have an appointment today, Monday, with the pediatrician, and I expect to get a clean bill of health for him. He's feeding wonderfully! He sleeps a lot, which I plan to enjoy while it lasts. And that, my dear friends, is how it happened. I'm going back to bed now. Talk to you soon!

Wow, listen to THIS! (or, read it, rather)

So, my slow butt didn't get to the ringing phone on time, but the caller left a voice mail. It was my ob/gyn, whom I haven't seen in weeks, because I'm "making the rounds", seeing different doctors each visit, which is fine, they're all wonderful.

She says, in her message, that she's reviewing my chart, the ultrasound from Friday, and all the other doctors' notes, and gave me kudos for doing so well. She also said that she's going to be out of town for the next week and a half, and just has a feeling that things will progress while she's gone. Just a feeling, nothing to place bets on, not part of a professional opinion, just a feeling.

It's hard not to mentally engrave THAT in stone, but I am excited, and certainly HOPE her feeling is, in fact, fact!

Keeping my fingers crossed,
Kathy

almost 36 weeks done, only 4 to go.

Hi folks, it's been a little while since you've heard from me on my favorite subject, (lol) my baby!! So here goes.

Today was my weekly non-stress test (this is where they put 2 belts around my belly, each with a monitor, one of them monitors the baby's heart beat, and the other monitors uterine activity {contractions} ) Every time I've had one of these tests, the Dr, whoever she might be that week, tells me I have a very happy, healthy, beautiful baby! Makes me feel good. Today was also my first internal check - (this is where the dr puts as much of her hand up in you as is painfully possible, and feels for the thinning and opening of the cervix, and the lowering of the baby.)

Believe me men - it's NOT sexy!

Anyway, none of that has happened for me yet, so although I've thought all along throughout this pregnancy that little PJ would be coming early, I'm starting to have my doubts. I might just have a lazy, hard-headed little man in my life! - hmmm... Wonder who on earth he gets that from? heeheehee.

Anyway, I get to see him every friday, and he does everything he's supposed to. practice breathes, swallows, moves a lot, so everybody at the dr's office is happy with him.

33 weeks down, 7 to go.

HI folks. I got to see my baby again, I have a few pics, but have to connect the scanner. They've estimated his weight at 4 pounds, 11 ounces. He's still active and doing everything right. The amount of amniotic fluid is now at about the 66th percentile, and the baby is right at about the 50th percentile. extremely average - which for any pregnancy is about as good as you could ask. An extraordinarily large or small baby, or not enough fluid, or too much, would just be cause for additional concern.

The Dr. was very happy with my blood sugar for the week, and is allowing me to fax in my sugars weekly, and have both my weekly visits at my ob/gyn office, which will still consist of the non-stress test early in the week, and an ultrasound later in the week. But it's closer to home, and more convenient, and hopefully not as time consuming. (My appt today was at 8:30, and because of issues - theirs not mine - I didnt get out of there till 11:00)

So, that's where things stand with THAT subject. (I know, it's really all I write about lately)

I'm quite happy it's Friday. I'm of the understanding the one of my employers has purchased the high chair from my registry, and the other one picked up all the snoopy bedding stuff, so things are looking really good for baby supplies.

That's about it from here for now. Have a great weekend!

32 weeks down, 8 to go, if I don't pop sooner

Wow.


Can I just say wow? I am floored by what being in the year 2007 can do.

I REALLY got to see my little man today. The 4d ultrasound was AWESOME! I had tears in my eyes the whole time. He's so beautiful! Wait till you see him!

The Doctor's were all gone, and the technician took her time, looking at him. We talked to him, watched him root for his thumb, saw him stick his tongue out, open his mouth. It was just ... WOW.

I can't update you on amniotic fluid, or anything else health wise, but I can tell you my baby looks great!!
Have a look see!











Wow.