lots and lots!

...where do i begin?

i have many exciting things to report!

justin was fitted for his second set of braces. rather than the afo's that he's had, he will now begin wearing kafo's. i learned about these kafo's via leigh's blog. once i saw them, i knew they'd be perfect for justin because he does great with just afo's while he's doing anything but walking. once we get him into his walker, he needs a little more support at the knees. i asked everyone about them. i asked leigh, i asked all 3 of our PT's and i asked our nurse. no one had seen them before except our nurse and she was pretty sure they have been done at ai dupont. the next week, one of our PT's said she called lawall's prosthetics (the ortho group in the hospital) to see if they made them and spoke with the guy that is most experienced with them. we were given a script soon after that and we got justin fitted for them that very same day. today, we got a phone call to let us know they're going to be ready on june 10th. i'm so excited! but, we won't be picking them up until june 13th because... JUSTIN HAS TO HAVE SURGERY. :(

it has been determined that justin is going to need another surgery on his spine. this surgery (detethering/tethered cord release) will hopefully help justin with the newest development of bladder issues he's been having and possibly the leg rotation we noticed once he started working with a walker.

about 2 months ago, we had a urodynamics and an ultrasound. it was our first one in almost a year, since we had been in transition from CHOP to dupont. we learned that justin wasn't voiding on his own. this was not good news, because before, we were only told justin wasn't emptying completely, but now he wasn't even urinating independently. due to this sucky result, we were to put justin on ditropan (a nightmare), and increase his cathing to 4 times a day. we would have to return in 6 weeks to report his volumes and to have a follow up ultrasound... because in addition to our sucky urodynamics results, our urologist noted that one of justin's kidneys was a little bigger (or smaller, if you prefer) than the other. he wanted to have us follow up to see if it was any worse, different in size, or problematic.

six weeks later, (the friday before mother's day) we returned for our ultrasound and we also had a record of justin's cath volumes for each cath one week prior to the appointment. his volumes were EVERYWHERE - anywhere from 50-300mL. they weren't consistent by any means. we knew this wasn't good, but we didn't know what to expect. after our ultrasound, we met with dr. banihani. the first thing he asked when he got into the room was, "has justin had any surgeries other than his shunt?"...meaning, neurosurgically (if that's a word). we said, "just his closure." he said, "okay. i think justin has tethered cord." i said, "really?!" but in a tone of like.... "you're kidding me, right?" he walked out of the room to get the record i had brought of justin's volumes and mama bear burst into tears. he explained that justin's numbers were way too high and random and this is a sign of tethered cord. he went through some of the questions we had and said he'd called neurosurgery to find out if they wanted to see justin. we left urology that day with fear and disappointment. we are now cathing justin 5 times a day and overnight. we're continuing with the ditropan (still a nightmare). and, justin's kidneys looked fine... it's just his "make" that one is bigger than the other. no biggie, as long as there are no changes.

before we even made it home from our appointment that day, i had received an email from dupont confirming a follow up appointment with neurosurgery. we were scheduled to go in the tuesday after mother's day. we came prepared with a list of questions. dr. campbell confirmed that he agreed justin is having tethered cord symptoms, but he doesn't feel the effects are permanent at this point.. this is so scary. we always knew tethered cord was a possibility. we always knew urological issues could come and go. but, we felt good when we left the appointment with neurosurgery. so, yes, our lil jubba is having surgery on thursday, june 2nd. we are told so far it will be scheduled for a 5 day inpatient stay, but that doesn't mean he has to stay for the whole 5 days. however, they want him to be flat for the first 3 days. how i will do this, i will never know.. but i'm assuming medication will be given to keep him a little relaxed. now that i'm home, i don't feel that i asked all of the right questions the day we met with neurosurgery, but i guess you can just never feel prepared when you know your kid's getting another major surgery.

i'm scared. i know there is a chance things could get better, stay the same, or get worse. as long as they don't get worse, i'll be happy. i know my lil jubba is a strong boy and he will recover, but i'm just kind of disappointed it had to happen RIGHT NOW.

why right now? because WE JUST ORDERED HIS WALKER (it's really a gait trainer). it should be here in about 2 weeks. we got word yesterday that the insurance company approved it and the vendor said it would be ready for us in two weeks. hmm. two weeks. what else is in two weeks? justin's second birthday! we have a HUGE party planned to celebrate two wonderful years with a wonderful little boy. i cannot believe my lil boy is going to be two.

so, yes.. we've got lots of exciting news. most of it is good news. justin is making wonderful progress, despite needing to have surgery. he's doing great with the gait trainer we practice with at dupont and he has mastered crawling up our steps. he's actually pretty pleased because he does it every chance he gets. he's proud. i'm proud. we're all proud of the wonders this kid can accomplish.

madi's last week of school is next week. she has enjoyed it to the fullest. she will be so bummed when she won't have to go all summer, but i'm sure she'll manage since uncle and dude will be around more often. next year, she will go to pre-k 4 days a week. she misses the cut off, because she is a september baby. i'm sure she'd do just fine with kindergarten, but i think she really enjoys the classmates she has. she has made friends with so many kiddos. i'm happy to see how much she enjoys school and other kids. in fact, her bff is also named madi. madi and madi have been asking for months to have sleepovers and get togethers, and they even fight over justin bieber. it's precious. i don't have the heart to tell them he's mine! ;)

finally.

justin said it.

he said, "mama." actually it was more like, "mamammamamamama," but it was clear and directed at me, and that's what matters. this was, by far, the most exciting to me of all his accomplishments (so far!). i've heard him say other words, but i've been anxious for this for about a year now. i cried like a crazy person last night when he said it. i'm so excited! i hope we are gonna be able to continue the improvements with his speech.

i find this area to be most frustrating, even more than the walking delay. i remember thinking when we found out he had SB, "well, at least we won't need to learn sign language." WRONG. but, either way, he's learning, he's communicating, and he's saying mama!

"demo baby."

justin has been a busy boy this month!

we recently "fired" our in-home PT and requested a new one through early intervention. i've always kind of had an issue with our original and at the last appointment we had with her, i realized she is just not working for us anymore. i talked it over with pretty much anyone who would listen, and everyone had suggested to request a new PT. the only thing holding me back was guilt. i felt so bad for wanting to fire her, because i knew she had no idea how much i dislike(d) her. i know she cares a lot about justin and his progress, but i felt like she wasn't doing her job. it had even got to the point where she would cut his appointments short if he was beginning to get fussy. of the 18 months we worked with her, honestly, she was only here on time TWICE. and it's not just 5 or 10 minutes here or there... i'm talking full 30-45 minutes late. every appointment! i couldn't take it anymore, so i finally talked to our nurse through EI. she could see how unhappy i was, so she agreed that we needed to find someone to work with us.

since then, we've had our new PT maybe 3 times so far and i think she is great. she's such a breath of fresh air! i love her techniques and her suggestions. i'm really glad we made the switch for him. i feel like she's very positive. she actually made the comment at his last session, "wow! you can really see he is motivated to walk!" i almost burst into tears! it's just nice to have some new people enter the picture to see what he can do. i hope this is the last time i have to "fire" a PT, but i know that i have to do what is best for justin, and we just weren't getting what we needed from our first.

we are still going to dupont twice a week for PT. he has been working with a rifton pacer gait trainer and it is really great to see the improvements he makes weekly. in fact, last week, he just took off! he didn't have anyone pushing or pulling him. he just started taking his own steps. he walked a complete circle around the gym, which is about 100ft (per the PT). TWICE! it was incredible! we are looking into getting a walker or gait trainer for home, and i am so excited!! i can't wait to have justin outside with madi and tyler when the weather breaks. i think it is going to be a big motivator for him to see his big sister and uncle outside, running around. and giving him a chance to tag along will be so exciting!

in december, we had a swallow study. it was determined that he was aspirating thin liquids. we were quite disappointed, but it explained a lot. we were then scheduled to have an MRI to make sure they could find a source, whether it be a chiari issue or a shunt issue. the MRI results came back as normal. nothing had changed since his first MRI (8 days old). no new issues were reported, so we didn't have to change anything as far as his liquids and the thickener.

then, justin had a feeding evaluation last week. everything looked good. we are still having to thicken his liquids to a honey thickness, but the lady we met with suggested that we make a goal to have him down to nectar liquids by the time of his next swallow study, which should be sometime this summer. this evaluation was also to rule out additional speech/feeding therapy. we don't have to have anything more than our weekly appointment through early intervention.

friday, we had a PT appointment at dupont and our therapist had asked us if we would be interested in allowing justin to be a "demo baby" for a big conference the PT's are having at the end of the month. i will get a packet with more information, but the short version of it, and the only thing i know so far, is that a big, huge, world known PT/presenter will be doing a 3 day conference. they would like to use some of the patients at dupont to demonstrate a few things, and they want to use justin. i'm pretty excited about it!

ready to crack.

i've been struggling a bit lately. times are getting tough, and it's been a long 19 months of putting on a happy face on days i feel really low. i have been emailing a very supportive friend and this is part of what i had written to him.

"so, i'm not sure if i ever told you about justin's medical issues, and if i have, i'm not sure if you know what exactly they are. he has spina bifida - he had a hole in his back at birth. with spina bifida comes a few other medical issues... it's a real pain. he's got the obvious muscular/nerve issues. he cannot walk yet. he can crawl on all fours, he can pull himself up to stand, but we're still waiting for some cruising and then hopefully walking with a walker. spina bifida also causes a chiari ii malformation. basically, his brain is more in his neck than what yours or mine would be.. think of a funnel. the neck is the funnel. the brain is the liquid down in that tiny little stem. this malformation can cause balance issues, pressure on the brain, which can cause vision problems, and there are a ton of other things that can be related to this ridiculous malformation. then we have hydrocephalus - water on the brain. if not treated, it could cause brain damage and/or mental retardation. luckily, justin has a shunt (basically a catheter that drains the fluid off of his brain into his stomach), to prevent these issues. because of the surgery to close his back, his nerves were kinda screwy. most kids have bowel/urination problems. we have the urination problems. he can pee on his own, but we cath him to make sure he is emptying his bladder all the way. so far, we have no bowel issues, but potty training will be tough because he doesn't have much feeling down there, and we don't know if he'll be able to feel a poo or a pee coming. but, we'll deal with that when it's time for potty training. on top of these issues, there are some other issues, too. we have 3 days a week that we meet with a physical therapist for gross motor skills. every other week, we see an occupational therapist that works more on his finger skills, like feeding, threading beads onto a string, that kinda stuff (he is AWESOME when it comes to OT), and we have a speech therapist that we see weekly who works with him on his oral motor skills (he has some swallowing issues), low muscle tone in his mouth, and of course, he doesn't talk yet. he can say a few words - "dad, eat, this, that, and hat." only dad, eat, and that are consistent. he knows sign language. we're learning it too. he can sign "more, bubbles, milk, eat, drink, please, block, and ball."

i don't know what's the hardest part for me in all of that. it's a lot to take on. i know life could be a lot worse. and i know we could be much more unfortunate when it comes to his health. did you know they offered to terminate my pregnancy at 30 weeks when we found out he had it? if i had gone into labor the same day we found out, he would've been a preemie, but he could've lived on his own. this baffles me that they'd even offer that. i could never do it, regardless. i can't live with that guilt. but, every day i look at my little miracle, even with all of his struggles and difficulties and i cannot imagine my life without him.

when we found out about his spina bifida we googled... a terrible idea, but i came across a website (babycenter.com) and they had a board on there called spina bifida kids. basically, it's a bunch of moms that come there for support, questions, issues, bragging, whatever. and this website is my lifeline. recently, i feel like every baby but my baby is walking. my heart is breaking. not for justin, but for me. i want that SO bad. i feel so much guilt because i know i should just be happy with the things he CAN do. there are kids his age with SB that still can't sit up independently, that can't crawl, that can't pull to stand.. and justin doesn't know any different. he's going to work his body to the best of his ability and he doesn't know any different. he doesn't know he "should" be walking by now. he doesn't even realize it's an option, it seems.

i feel like my life, as of lately, has been nothing but "when will he walk?" i am tired of carrying him. he's almost 35 pounds. because he has low muscle tone, he can't even wrap his legs around me to help me when i carry him, so it's like carrying a 40 pound bag of sugar. every day. all day. i hate that i feel "tired" of holding him and carrying him and lifting him. and driving for him. and having his bitchy PT come to my house. i can't help it, but it's been a long 19 months and it's wearing me down in every aspect of my life. i feel SO MUCH GUILT because of his spina bifida. they say it's due to a lack of folic acid and/or genetics. while we have never had any genetics testing done, i can't help but feel guilty because i'm not as healthy as i was while i was pregnant with madi. i got fat (and of course that's hard enough on a woman), but being fat means i wasn't being healthy, which means i wasn't eating the proper foods that are high enough in folic acid. and i wasn't taking prenatal vitamins before getting pregnant. i feel like all the factors are because of me. but the point is, justin's got spina bifida. it doesn't matter. spina bifida doesn't go away. it's here to stay.


i can only make the most of this crappy situation, but it's hard. i have to look at every day as a blessing. like, i always should have, but now i have to or i will break. i am so thankful for my children and what they can do, but my god, it is the hardest job i've ever had. i am so lucky to know that i can even have kids. i have always wanted to be a mom and i would go crazy if i couldn't have kids. even after this, i still want at least one more. it will be awhile, but i know this is my "path" in life."


his response:

"I admit that when you first told me that Justin had SB, I didn't even know what it was. I had to ask. I was shocked; I suppose I knew such things happened, but I had never known anyone who had had to deal directly with them. I'm so sorry that this burden -- for lack of a better word, and which I do not in any way mean to imply that Justin is a burden -- has been put upon you. That's what dealing with something like this in real is: A burden. In a religious story, it's a test; In a movie, it's an obstacle to be overcome; in a spot on the evening news, it's a "human interest" story that makes viewers feel good by demonstrating "one family's struggle against the odds." But those are all narratives. And this is your life, not a story. You actually live this day to day. And I wish you didn't have to. I wish that you had the pleasure of caring for a healthy child, not because a healthy child is in any way "better" than one with SB, but because it would be easier on you. I'd like you to have an easy, joyful life. Instead, you'll have a tough life from which you'll have to wring whatever joy you can. I know you're up to that task. I just wish you didn't have to be.

I don't want you to blame yourself for Justin's condition. I know you will anyway. I know that, as a mom, as an awesome mom, you'll take that responsibility upon yourself. But it isn't your fault and it isn't Zac's, either. Maybe it was the folic acid. Maybe it was the genetics. Maybe it was God's will. It doesn't matter. What matters is that, when you're tired and cranky and you'd rather be taking a nap, you continue to carry your potato sack of a boy around. You demonstrate on a daily basis, through all of your actions, that Justin is by far better off with you than he would be with most other moms. He was fortunate to have been born to you.

When you're weary, you can lay your head on my shoulder, and I'll tell you how great you are, and after you've rested a bit, you can get back up and get on with being a mom again. A damned good one, too."

that is SO what i needed.





anyway, we had our first spina bifida clinic at AI Dupont last tuesday . we had been followed by CHOP since justin's birth and just had repeated horrible experiences there. we finally got to the point that justin was suffering from CHOP's crappy treatment, and we had to make the move.

first, we met with neurosurgery. justin had a swallow study done last month that showed he was aspirating on thin liquids (water, juice, some milk), so now we have to add a commercial thickener to his drinks. this helps with the aspirating, but of course, why is his swallowing not 100% is the question. so, we will have an MRI done to show us his spine and his brain to make sure there are no issues with his shunt and/or to rule out a decompression surgery to treat the chiari malformation. as much as i don't like the thought of him having ANY surgery, i'd rather treat these issues than see him suffer in other ways. so, we have an MRI scheduled for next wednesday and we will meet with neurosurgery after to discuss what they've found. hopefully nothing!

second, we met with rehab medicine. this doctor is like magic. the first day we met with her, we came home that night and justin began to crawl on all fours. today, she wanted to see him "stand" in his afo's, and he stood with the least amount of support he's ever had. it was like christmas or something. i was thrilled to see his determination to show the 3 doctors in the room that he's well on his way to conquering this disability. justin's left leg kinda turns out a bit, so we need to try to facilitate his leg/foot to come back to a straight position. there are a few medical options to treat it, and from what i understand, he may not need surgery. but, again, once the MRI is done, we will decide which treatment we will use to help his leg stay better in place.

and our last appointment of the day was with urology. this was my biggest stressor. justin has been cathed since birth. the frequency has fluctuated a bit, but at this point, zac and i are pros at getting the job done. my fear was that we'd have to increase the frequency rather than reduce it. even if we had to just continue what we were doing, that was fine, but judge is a squirmer and it's hard to hold a 19 month old down and cath him. i don't want to do it any more than i really have to. so we met with the doctor and of course, they didn't have his records from CHOP (they were still in another department), so we were telling him as much as we could with little medical knowledge of our own. finally, the nurse had located his paperwork and he saw that justin had NO REFLUX and NO PRESSURE in his bladder. this is GREAT. granted, it's a test from about 6 months ago, but he was so pleased with the results from his last study/ultrasound, that he said we could continue to cath him as we do (BUT LESS!), until he has a new study done at Dupont in about 4-6 weeks. what a relief that was.

it was a long day, but a good day. i hate the whole "wait and see" part of it, but that's been spina bifida all along. my entire pregnancy were no definite answers, because every case is different and just because he looked one way in my belly didn't mean he'd actually be that way once he was born. and now, we wait for the MRI results to see what our next step is. despite hating that we have to put him through all of this, CHOP never suggested any treatment. none at all, other than his basic SB related surgeries. they never did any baseline studies or suggested more therapies. they just suck compared to dupont. it's incredible, the difference between the two.

i'm a thief.

i found this online. i liked it. so i stole it.

The Ten Commandments for Parents of Special Children

1.Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2.Never under estimate your child's potential. Allow him, expect him to develop to the best of his abilities.

3.Find and allow positive mentors, parents and professionals, who can share with you their positive experiences, advice, and support.

4.Provide and be involved in the most appropriate educational and learning environments for your child from infancy on.

5.Keep in mind the feelings and needs of your spouse and other children in the family. Remind them that this child does not get more your love just because they get more of your time.

6.Answer only to your conscience, then you will be able to answer to your child. You need not justify your actions to your friends or the public.

7.Be honest with your feelings. You can't be super parent 24 hours a day. Allow yourself jealousy, anger, pity. frustration, and depression in small amounts when necessary.

8.Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished!

9.Stop and smell the roses. Take advantage of the fact that you have gained special appreciation for the little miracles in life that others take for granted.

10.Keep and use your sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Author Unknown.

MERRY CHRISTMAS!
hope you all have a great holiday.

what a difference a year can make..

this week, i was putting up christmas decorations. i thought back to christmastime last year. i recalled the many parties we attended with great family. i found christmas cards we received last year. then i remembered last year, when we sent out our christmas cards, we included our family picture for our friends/family. then i remembered how i felt the day we had our pictures taken. it was exciting, because it was our first pictures as a whole family (until baby number 3 comes along - in like 5 years). but it was kinda sad too, because the photographer had trouble keeping justin's attention with pretty much any of the toys. i didn't expect him to be completely involved, but he couldn't really do much to even get a good shot done. it's hard to not let the little things like that get to you, especially when it's all so new... but i remember thinking that day, we'll get through this, and we'll be able to include these pictures in a scrapbook of justin's progress so he can see how hard he's worked and how far he's come.

last year, justin was about 6 months old during the holiday season. he was still unable to roll over independently. he couldn't really lift his head during tummy time - a little, but not much. he still needed a bit of help with sitting up independently.


this year, justin is doing all of those things - AND MORE! he can crawl on all fours. he's working on weight bearing, and he's doing awesome with it. he's been able to stand at a "workbench" for minutes at a time, even! we've introduced a walker to him and so far, he's handling it okay. he has lazy days, but he is still willing to work with it.

walkin'.

big sister, madi, tormenting/helping judge reach for a ball.

balancing, with assistance from one of our awesome pt's at dupont, and grabbing rings from madi's head.

but, look at him now! look at these great pictures i can include in my scrapbook! look at these great accomplishments!

the last two years have been the hardest two years of my life. i've dealt with some very trying times. i know there will be harder times ahead, but i know there will be better times ahead too. and more than anything, i know that there are great things in store for justin and our family.

i can't wait to brag about what he can do a year from now!

little did i know....

when i was a little girl, i remember watching tv with my mom and seeing a disabled child. i don't recall what the disability was, but i remember having a conversation with my mother... something along the lines of, "i think if i had a kid like that, i could only love him more." little did i know what was in store for me.

one day while pregnant with justin, i'd forgotten to take a prenatal vitamin. when i went to get it, i thought to myself, "i'm glad i remembered to take this, i wouldn't want my baby to have spina bifida or something." little did i know what was in store for me.

the day we were diagnosed with spina bifida, i cried. i questioned. i was scared. i think generally speaking, doctors don't give much hope, but we were lucky enough for most of ours to say, "we'll just have to wait and see." to some, that may have been more painful because it only broadens the spectrum of what spina bifida is, but i think for us, it made things a little easier to not dwell on the bad stuff.

recently, a bunch of us LUCKY spina bifida moms were introduced to a poll. this poll was... uncalled for? insulting? scary? SAD.

a woman recently learned her baby has spina bifida. she was given three options.. TERMINATE. participate in the moms study. or deliver full term. i'm not sure what irked me more... the fact that she made the issue public to everyone or specifically to us, the LUCKY spina bifida moms, or the fact that she had a pretty good percentage of people telling her to terminate that little life inside of her. that percentage probably knowing nothing about spina bifida.

it brought up a whirlwind of emotions to many of us LUCKY spina bifida moms. some were hurting, some were angry, some were dumbfounded.

in recent days, i feel it has made me look at my son a little more differently. with more love than i had days before. i've never felt so LUCKY to be a spina bifida mom.

i can only pray this woman makes the best decision for herself, her baby, her family. only God knows what will be best for them, but i just wish she could see what joy our babies have brought to our lives. sure, we have PT appointments every week, but those appointments have introduced us to some of the most amazing people. some of them, i consider to be close friends, and we've only known them for little over a year. justin loves every single therapist he has, and they love him just as much. sure, the stress levels are a little high when they puke on you - is it a bug? is it the shunt? but we have some of the best doctors to take care of him, and we know we can rely on them. and they don't scare justin, so it's never stressful to take him in (which is few and far between). yeah, i worried about madi feeling neglected and left out, but we include her in everything we do. how many four year old kids do you know that want to help cath? that know where to get a catheter - that even know what a catheter is!? because we've allowed her to be such a big helper, she's the best big sister i've ever seen!






in other news, more exciting, happy news - JUSTIN GOT HIS BRACES!!! we had gone to AI DuPont in the beginning of September for a consultation. it was a great day. we met with the ortho doctor, she brought in a PT, they evaluated him and came back into the room together. they said to me, without me pushing, fighting, complaining, - "we suggest for him to be fitted for AFO's." i could hear music, i was so excited! along with the AFO's, she had suggested knee immobilizers. so far, we've been having a great time with them. that day, we went to get fitted for the braces, and they were done in 2-3 weeks. they're blue with little rockets and martians on them. SO CUTE! they had also suggested for him to have a hearing screening done (PASS!), an opthamology consult (PASS!), a spine xray (TBD), a swallow study (12/9), and at some point, a baseline MRI. the night that we came home from AI, justin began to crawl on all fours! it was one of the greatest days ever. we had such a successful day at DuPont, then to come home and see him up on all fours, crawling across the living room - it brought me to tears! then i had to call everyone! there is nothing i enjoy more than bragging about our little man. our little fighter.

(DAY 1, with braces)

we've also increased his PT to 2 times a week at DuPont, keeping our EI PT here at home, too. so, we're busy! it's nice to have PT in a hospital setting because they have equipment we don't have access to, and would never have room for.. but, we still get to keep our PT here at home, so we have justin working with his environment. we've got speech therapy once a week now at home, too. and we still see OT every other week. not to mention, madi is in preschool 3 days a week. these kiddos keep us going!

speaking of preschool, madi has been doing very well with it! on her first day, she told the teacher that she already knew everything... UH OH! haha! she loves it though. she sings songs to us that she learns every day. she gets upset if they don't get to go to the playground though. that's really her only complaint so far. she seems to be making a lot of friends. she's always got someone to include in her stories (when we can get her to talk about it - she's kinda secretive!). i just can't believe my baby is in preschool.

October is Spina Bifida Awareness month.

To "celebrate," the LUCKY spina bifida moms (and dads!) at babycenter have decided to have a shirt made to support our babies, our bond. these are some of the strongest people i know. they're always there to help whenever someone has a question, is celebrating a new milestone, or feeling like they're ready to crack. if it wasn't for our beautiful babies, it would've never brought us together. and again, we'd be missing out on some of the greatest, strongest people we "know."

clinic update.

this is impressive... two blogs in one month! first time in a long time.

i thought i'd update since we had spina bifida clinic at chop last week. things were good, things were bad.

our day started off with a visit to SB clinic. we first met with dr. hachen. she seemed to be pretty happy with him, but did not fail to mention that he's "too heavy," and it could be a problem if he's ever able to walk. i know. i get it. i think they seem to forget that he was almost 10 pounds at birth. but, she suggested we give a call to the nutritionist we saw a few months ago. i haven't done it yet, because i'm a slacker, but i will. i also asked her if he might get fitted for afo's. she wasn't sure, but said it would be up to the PT. so, enter PT. "no, no braces." i guess you could see the gloom in my face when she said that. so, she asked why i think he is ready for braces. i reminded her that at the last clinic, she said they wanted him to "transition from laying to sitting and transition from sitting to laying." he did that within 3 days of his last visit. also, j is working on pulling up onto his knees. both jen and cheri (PT and OT that see him weekly) think he's ready for them. and they wouldn't set him back at this point, so i don't understand why they won't go ahead and at least give me the script. so, of course, she wants to try to get him to pull up onto a chair. HELLO?! by this point, it was almost 1p, he hadn't had a nap at this point and it wasn't really working out for him to do what she wanted him to do. not to mention the chair was much higher than what we practice with here at home. so, of course, she still says no. so then i said that our PT has emailed her to discuss justin's case so they can compare notes and make sure they're working on the same goals. she swears she never got the email, but she is sure to always respond to phone calls and emails any other time. did not help the case, at all. i was steaming by this point. so, finally, we agree that she will give me the script. she and cheri can discuss their thoughts, and cheri will tell me whether or not they feel i should go ahead and get the braces. the PT there even tried to talk me out of it, complaining about the cost of them and some other crap i didn't wanna hear.

so, we head to neurosurgery for a check up.. first one in a long time. we met with the nurse practitioner there and she thought he looked great. we went over his health history since his last visits with neuro. she said she was going to check with dr. sutton to see when we needed to return. we were previously told every 6 months, she suggested every 3 months. when she returned with dr. sutton, he decided that because justin has been doing so well, has great head control, and no shunt issues, we can be discharged!! i wasn't expecting that at all, but i'll take it! of course, we will still call them in the event of an emergency or shunt issue. but, wow. it is such a great feeling to know that is one doctor less to visit with during our trips to chop/spina bifida clinic!

after our visit with neuro, we head back to clinic to meet with dr. davidson (ortho) and jeanne (sb coordinator). we wait. we wait. we wait. finally, dr. davidson comes in, complains about a trip down to the nicu. he asks if i have any concerns/questions. i thought maybe he'd back me up about the bracing thing, cos he and the PT both said at our last visit, "he should be ready by next clinic." do you think he'd back me up? no.

he checks justin out, defends his reasoning for why he does not need them. as he's doing his dictation, someone stops in with the script for the braces. i had attempted to tell him about the "deal" we made earlier with the PT in regards to taking the script home and waiting to act on the bracing process, but he cut me off. when they handed the script to me, he ripped it out of my hands and says, "I thought you said they weren't going to do braces?!" i attempted again to explain to him the agreement from earlier, and he simply says, "no. he's not ready for them. next clinic he will be."

i was FURIOUS when i left there. and of course, i'm a sensitive soul, so when zac asked me about it, i burst into tears! i don't even think it was about the fact that they wouldn't give him the braces. i understand medically why they won't. but i was so disrespected. i'm so tired of being told, "next clinic he will be ready." this is the 3rd or 4th time they've said that to us. each time, they give us a goal for him to reach, and he does it within days.... why do they keep putting it off?! i wouldn't care if they gave us a list of 30 things for him to accomplish, just stop getting my hopes up saying, "next time," and then not following through!

so, with that being said, friday, we had a visit from our AWESOME EI nurse, kim. i explained the situation to her, and zac and i had agreed after his SB clinic, that we should get a second opinion from AI Dupont. we set up the appointment that day. so, we head there in two weeks for a consultation with rehab medicine. i'm so excited. at worst, they can say, "yeah, we don't feel he's ready either." then i can at least stop fighting for it (for now). but, i'm hoping they see all of justin's hard work and they agree he should be rewarded with braces!

also, for those of you who still follow the blog, i forgot to mention in my last post, that we thought justin had a seizure last month! i wasn't home, but zac said that he stared, shook (like a chill, not a convulsion), and stared again. the whole "seizure" lasted about 15-20 seconds, he said. so, we called neuro and told them, they suggested we check in with his pediatrician since he doesn't see a neurologist. the peds decided since he was fine before and after that i didn't need to bring him in, just watch him and get a call in to set up an appointment with neurology. LUCKILY, chop just opened a specialty health care center a week or so before that, so we were able to get in two days later! usually, they said, it takes about a year to get an appointment with neurology. SO LUCKY. we met with the neurologist and she felt that he had what they call a "shutter spell." it's common in a lot of kids, not just kids with special needs, she said. but, because of his health history, she suggested we do an EEG. we were able to do it that day while we were there, and she read the results right away too. they came back NORMAL!! zac and i were so happy!

so, it's been hectic, but it's been an exciting summer. madi starts PRESCHOOL in two weeks. PRESCHOOL, people! my baby's growing up! she's so excited though. we are having her birthday party a week early this year, so the family can mourn the loss of stevie on the one year anniversary of his death without any interruptions. all in all, it will be a great day to celebrate madi and on her actual birthday, we're going to do something fun with her, then have grandparents over for dinner or something.

justin's ONE!

i've been such a bad blogger this summer. i have good news in place of my slacking!

justin has been doing awesome!! he is into EVERYTHING. i don't ever remember having this much trouble with keeping madi out of things. he makes the biggest messes within minutes of getting ahold of his toys. the boy is amazing!

so, justin had some evaluations done this summer prior to his one year IFSP update for early intervention. we had a teacher come in to evaluate him to see if he needed her (or any other services). oddly enough, she was a friend of the family! she was thrilled to finally meet justin after hearing so much from him not only from gram, but from his therapists at EI. she felt that justin was doing great with everything he's accomplished. she had suggested that he start speech therapy though, because that was his greatest delay. he can understand and follow direction, he just couldn't communicate. he wasn't talking AT ALL by the date of her visit. she really wanted to get someone in here right away to get him going with his speech. he was also evaluated with his OT and his PT. his delay with OT was barely a delay! we see jen once a week, and we were actually looking for things that would allow us to keep her on at all.. EI considered taking her out altogether. our service coordinator told jen she had to have reasons why she should be here weekly, let alone... at all! so, we came up with a list of things he should be working on and we're able to keep her at biweekly for now. he tested right at his age-range though, so that's great news... it makes me laugh a little to think 5 months ago at his last appointment, i was in tears because they thought so much improvement needed to be done, but now we're actually trying to keep his services! PT went pretty well. he still tested with a 3 month delay in most areas, but i think that's pretty good! he's crawling everywhere... he's able to transition to sitting from laying and laying to sitting. he's propping himself up on his knees and attempting to reach up now. he really enjoys being upright, but SB clinic has been giving us the run around with getting his AFO's and a stander. so, when we return to clinic in two weeks, i'm READY. everyone that sees him feels he's ready for some equipment, and i will be furious if they say they want him to do something else before he has it. PT will be kept weekly, so i'm happy with that. they're bringing in the speech therapist, but i still haven't heard from her to set anything up yet. i got a call from his coordinator on tuesday and she said they'd be doing speech therapy weekly.

since then, justin has said "DADA!" he's babbling much more now than he was before. we've thought he's said more than just dada, but i don't wanna get my hopes up. either way, i think it's great he's doing it on his own and now that we have speech therapy coming in, it will be even better.

madi starts preschool next month. i'm so excited, but sooo nervous. she's so independent and wants to do everything on her own. she listens well in a new environment, but i'm afraid once she gets comfortable, it'll wear off and she'll be back to trying to do her own thing. it will be so good though for her to be around kids her own age. i'm excited for her to bring home crafts and things... it will be so cute!

my dad was in the hospital this past week and he has to get surgery. i'm not exactly sure what the name of the surgery/procedure is, but the second option is for him to have a pacemaker put in. either way, i'm hoping he feels better. he went to the er on monday afternoon and they kept him overnight to monitor him. he was able to come home tuesday, then i suppose he'll get a monitor for a few days and could have surgery by the end of next week.


here are some of justin's first birthday pictures, as promised!! (there are also more on my facebook page, if you're interested).

^getting used to the cake..^loving the cake...

^justin's smash cake!

^the party cake...

^justin with his papaw!^the aftermath!

^madi & gram
^my lil athlete!
^he's ONE!!
^closeup. :)
^looks even better in black and white.

(*all of our professional pictures were done at www.portraitinnovations.com
and i highly recommend them to anyone. they have great deals!)

clinic update.

i am the world's worst blogger. we have been so incredibly busy, i haven't had time to update all of our exciting events in the past month. i don't even know where to start!

about 3 weeks ago, justin started army crawling! he's so quick!! and now that he's mastered the art of the army crawl, he's working much harder (and succeeding) on getting his knees under him enough to be up on all fours. it's so crazy to see that he can do it and push himself farther.

on may 19th, we headed to CHOP for spina bifida clinic. we had a busy day that started with clinic. first, we met with the PT there and she was really happy with him. she said he is still functioning at an L4 level. we were hoping to get him fitted for braces that day, but no luck. she thinks that he'll be getting fitted for AFO's at his next visit, provided he can transition from sitting to laying and laying to sitting. she suspects that is the only bracing he'll need. after meeting with her, we went to visit the pediatrician that, as always, he said justin was too heavy. after that, we met with ortho, and he thought justin was doing great. he did mention that justin might need surgery later (didn't say exactly what for sure, but sounded like tendon release). he didn't really go into it, so i'm not worried about it til it's more of an issue, if it becomes one at all. once we were finished there, we headed to radiology for his renal ultrasound... urology was my biggest stress of the day. at his last visit, they determined that he needed to be cathed more frequently due to some build up.. they started having us leave the cath in overnight in addition to cathing him twice a day. after his ultrasound, we headed to urology for urodynamics and they said everything looked good! we didn't have to change anything, anddddd, they took him off of his medication! there were no signs of reflux, build up, etc. SUCH A RELIEF. that made my whole day.

andddd, we celebrated justin's 1st birthday!!! we had a pirate themed party. we did treasure hunts, a pinata, cannonball blast game, potato sack races, etc. we had a great time. i worked hard to give him a great first birthday. of course, i couldn't find my camera, so i have to steal other people's pictures... but, we also took him for his first bday pics, and they turned out GREAT!

unfortunately, i'm having trouble posting them right now, so i will be sure to add them later when my computer/blogger isn't being so gay.

easter and evaluations.

i've been putting off this entry for far too long. i still don't really wanna update (because i'm lazy), but i'm afraid if i wait too long, i won't remember anything that has happened in the past month.

i guess i'll start with justin's 6 month IFSP update through early intervention (that was four months late). after months of not hearing anything through early intervention and not getting proper paperwork in a timely manner, i finally called our service coordinator. we were able to throw together a last minute meeting without all of justin's therapists (he sees PT, OT, and a nurse). i was SO excited for his meeting because i was so excited for everyone to see the great strides and improvements justin had made during the past "6" (really 9) months.

so, the day of the evaluation, we had his PT, the nurse, his coordinator and the supervisor come. things got started okay, but they ended with me in tears. i know that justin has obstacles and i know that there are things he needs to make progress with, but i guess when you sit down and have a whole list of "issues" given to you, it's a little harder to deal with. i can't say that i have a problem with his PT, but i can't say that i don't either. i don't know what it is, but it started from our first encounter. the night before i was to return to work from my maternity leave, she called our house at 9pm, asking if she could come the next day for justin's first visit. i asked if she could come earlier than 10a, and she simply said, "no." she would not budge, but luckily, work was understanding and i was able to go in late that day. many times, during PT, i catch her watching TV more than she is working with justin. so, we turn the tv off to fix that problem. then, of course, she's late to EVERY SINGLE APPOINTMENT. other than last week, i truly cannot recall one appointment that she's been on time. luckily, at this point in time, i'm not working, but how frustrating is that?! it ruins your whole day if you have plans. i rush home from morning events to be there on time for her, and she's always late. i get along with her great, but these few things really bother me. also, throughout the 9 months he's had PT, she's made comments here and there about things. the day he turned 8 months, she said, "is he 8 months yet?" i said, "yes, today." she said, "oh, well he should be crawling by now. we gotta do something!" .....hello? what have you been doing for the past 7 months? that comment stands out the most, but like i said, little comments here and there. she's done great in teaching us how to work with him at home, but she can just be so frustrating!

well, anyway, the day of his meeting, she had a buttload of things she wanted to address. i'm really bitter about it, not because i don't think she's looking out for him, but because these things were not what she had discussed with me before. i felt totally blindsided! and i know each week she might have a suggestion of things to work on and after 8 months of weekly visits, they add up... but, it was unreal! and they were things she had never brought to my attention before his meeting. i got upset at the meeting. i was furious with her, but after i had time to think and get over it, i know she's doing what's best for justin if it means to bombard him with extra therapies (after this meeting, his OT was increased to weekly from biweekly, and they're bringing in a teacher after his birthday), while he's young. and regardless of the suggestions, i wouldn't want to hear my kid needs additional therapies from anyone, not even my own mother. no one wants to hear negative things about their children, period.

for a week or two after that, i was really depressed. i felt like she had called him stupid, because she made the comment that he doesn't "play" like a "normal" 10 month old.. yeah, my dramatic interpretation, but i can't help it. i also was upset that she had brought up secondary scoliosis. she had asked if the doctors ever mentioned it at clinic and the only comments we ever heard were that there were no signs of it. but she had mentioned that she thinks he has early signs of secondary scoliosis. she never told me her thoughts prior to the appointment, so it came as a big shock. but then i got upset because i didn't know exactly how it differs from "primary" scoliosis. so, of course, my next question was what is she seeing that the doctors aren't seeing? and that's scary! i know she's with him weekly, so she sees him more than they do, but it's really awful to have to think your doctors are missing something of that nature.

after the appointment, she had texted me to see if i was okay. she felt really bad about the fact that i'd gotten so upset, but i trust her.. and i know she's just doing what's best for justin... even if i wasn't expecting the more negative comments that day.

i agonized a lot over what justin's not doing compared to other babies his age. i worried about what chelsy's baby was doing. i worried about what liam was doing. i worried about everything i couldn't control. i worried about everything that didn't matter. justin isn't like them. i can't focus on what he's not accomplishing. i need to focus on what he is able to do. and, it's amazing what he's overcome. this kid is a fighter. he may never be a walker. he may never do a lot of things, but he will always fight. i am so proud of what he can do, and i get so excited when people ask me how he's doing.. it's the best feeling in the world to brag about him.

the meeting only made me work even harder with him (which i didn't think was possible!), but already we're seeing improvements with him. his PT was here on thursday and she was really impressed with him. she told us to keep up the good work.. that's nice to hear, but part of me wonders if it's genuine, because i'll always have the episode at the meeting in the back of my head... but, like i said, i can't worry about that stuff. he's doing awesome. what made me feel even better about it, is friday, his OT was here, and she was amazed at what he was doing. he is sitting up straighter, more erect... he would always "fold" over when he'd sit up on his own, so we're working hard on those lower back muscles for him to stay up longer, by himself... and it's paying off. his weight bearing is getting better. he is doing much better too with transitioning between sitting, sidelying, and moving onto his stomach. he's pivoting on his belly from point to point.. he's been doing this for a few months, but he's getting pretty quick with it the last few days. he's rolling consecutively in all directions. he's able to catch himself when he starts to lose his balance while sitting. he's playing better - he's been putting balls in one bucket and into another. he's been playing more unassisted with his toys. he's playing peek-a-boo! and this is the best part.... he did an army crawl while the OT was here!! i can't even believe it happened, so i was SO happy that she was there to see it too. despite my two week mourning period, i'm so proud of him. every day is something new.

pictures of him playing peek-a-boo!
easter morning!



madi and i have been visiting preschools for about a month now.. it was really hard to pick one! we finally settled on one that's fairly cheap and close to home. it sounds like they have a lot to offer, and i was impressed during our visit. she will be enrolled for 3 days, one of which is what they call an "enrichment day," and luckily, we were able to sit in on one of those classes too. madi got to help with making their rainbow salad. she was really excited about it and didn't want to leave, but she didn't want to leave any of them while we were there. there was one that was not even questionable, we just knew it wasn't the one for us. but the others were tough! two were ruled out by distance, but of course, they were the cheapest.. i just would've made up the difference with gas money, so i'm glad i did the research, cos they were all really nice schools. i just can't believe my baby's gonna start school in the fall. she's been asking to go to school since she could talk and has really brought it up a lot lately, even moreso since we started visiting.. she gets so jealous when uncle comes home with his bookbag and homework. i think she'll really enjoy it. and she definitely needs to be around kids her own age more often. she also needs to practice with sharing! she does well with it, but she's not as consistent as i'd like... she's just way too spoiled!

i can't believe in a month justin will be one.. we're planning a big party.. and i cannot wait to celebrate this baby's first year of life!

last week, gram, justin, and i went to visit an amish woman that has a daughter with spina bifida. she's 8, and walks unassisted. it was SO nice to meet the woman and she invited us back to meet her daughter sometime.. so maybe when school's out we'll get a chance to visit. it was awesome, and i can't wait to do it again. we could only stay for an hour cos justin had OT, but i felt like we could've talked to her for hours.

annddd, zac and i will be attending a rehab conference in two weeks. it's a full day of speakers dealing with spinal cord rehabilitation, movement therapy, and more.. it will even hit some financing areas, such as wills, trusts and changes for funding with certain medical issues in the next few years. i'm looking forward to it.

a 3-day diagnosis.

as a mother, there are days and events in life that you will always remember.. your first kiss, the moment you fell in love, your wedding day.. and for some of us, the diagnosis of your baby to be born with spina bifida. for the past ten months, i've amazed myself at all of the things i've "forgotten" about during our sb journey. i forgot about most of the bad things we endured during our nicu stay... oxygen? such a distant memory! i had almost tricked myself into forgetting that pesky date - the date of our dreaded anniversary.. one year ago yesterday, our journey began.

i never anticipated forgetting any of this. with something so monumental that is going to change the rest of your life, the date never stood out to me. i knew it was march. i knew it was toward the end of the month, but i actually had to "research" the date we found out. i had asked cindy to check the computers to see if i was marked out any particular days in the computer last year.. nothing. i came across justin's ultrasound pictures this week, and it's there that i saw the dates for our first visit with a upenn doctor. march 26, 2009. that's the date i will never forget (now that i actually know it).

i woke up that morning and i just knew it was going to be a bad day. it was cold. it was muggy. it was raining. i remember looking out of our bedroom window as i woke and not seeing the sun was such an indicator to me that i was not going to like the day's events. i braced myself for what was ahead. we left for our ultrasound. not one bit of sunlight the whole trip to west chester.

waiting rooms are always a pain. the few minutes we waited were an eternity. it's amazing how fear can change time. i swear, it felt like we were in that waiting room for days before the ultrasound tech called us back.

we get the procedure started... she does justin's 5th or 6th 2D anatomy scan. she prints a few pictures.. then says we need to "wait." so, i ask, "were you able to find what they couldn't?" meaning... the first anatomy scan they did, they had mentioned something wrong with his neck... whatever they said, i don't remember word for word, but it led me to believe that he didn't have a neck. things were missing (ie: cerebellum), frontal lobes weren't measuring correctly, etc. of course, "no," was her response. the tears started coming as she went to locate dr. wang, the first upenn doctor to diagnose justin. dr. wang came into our room to try and see if she had any better luck. and she did not. she told us justin had a chiari ii malformation. no big deal. i'd seen an episode of mystery diagnosis where a little boy had chiari. he walked, talked, lived a normal life. but i still cried. i knew we had a journey ahead. dr. wang scheduled me for an MRI at chop the next day.

and then we were sent to a room. that dreaded room with windows that shone no sunlight. the room where they gave us the "option" to terminate. i was blown away. i was 9 weeks from my due date... if i had an early labor, this baby had the potential to survive. i was insulted that they'd even given us the choice. they also suggested an amnio, but they didn't have time for it that day. so we left, and of course, as soon as we got home, they had called us back to the office because they were able to fit us in. so, we went back, had the amnio and came back home. the next day, we were off to chop. we were told the MRI would take about 30 minutes, and i was in there for more than two hours. we didn't get any results that day, so we had the spend the weekend full of wonder.

i returned to work on monday which was definitely in the top 10 longest days of my life. finally, around 11:00a, dr. wang had called with results. she asked if it was a "good time" to discuss results.. no. not really, but it won't be any better later. however, i did have her call back later that afternoon because it was a busy time at work. more waiting!

but, finally, 3:00 came and so did the tears. i never suspected spina bifida. i thought chiari was the diagnosis. i expected some balance and coordination problems. not the possibility of paralysis! but, justin was our destiny. we would embrace this journey and new life with open arms.

i will never forget the instances leading up to the 3-day diagnosis. it has changed our lives forever. despite that gloomy thursday when it all began, justin was born exactly 9 weeks later.

the sun was shining that day.

9 months.

i took justin for his 9 month check up on monday... we got good results!

justin is going strong at 23 lbs (has been since 6 months). and he's 28 3/4 inches. his head circumference was stable at 17 inches. they were really happy to see how well he's doing. the only thing he's not doing for his age is crawling, but he is definitely showing an interest. he can pivot and he FINALLY can roll over on his own! one night last week we were playing and out of nowhere, he started rolling, and he's been doing it nonstop every chance he gets since then! it's so exciting when he does it. he got two follow up shots for the flu (swine and seasonal), and they did a hemoglobin check.. unfortunately, he didn't cry for any of the pricks, but he did seem to know something was going on when they were doing it. it's so tough.. i hated to see madi cry when she got her shots, but it breaks my heart when he doesn't! he cried the last time, and i was kind of hoping he would this visit, but i wasn't so lucky... (that sounds so cruel, but i hope you know what i mean!)

we have lots of appointments coming up for justin. we're meeting with a nutritionist next week. the dr we met with on monday says he's doing really well for balancing his height/weight. the fact that he's been a steady 23 lbs for 3 months is great. but, the physical therapist of clinic made the comment that he was too heavy, and that could hinder his mobility, so we're following up with the nutritionist. i'm hoping we don't have to adjust much, but it's worth it to fix any issues now rather than later. then we have an appointment with urology.. about two weeks ago, justin stopped peeing on his own. i was getting him ready for bed one night and his diaper was totally dry. i thought this was odd, considering he'd had a bottle since his last cath a few hours prior to that. so, i cathed him and there was 140ish cc's of urine! i was concerned, but i figured maybe it was a fluke (it was a sunday night, too), so i 'd wait for the morning and if it was a dry diaper again, i'd call urology. of course, it was a dry diaper monday morning... so we called urology, they wanted us to monitor him for 24-48 hours and see if it got any better.. it did. he is now peeing on his own again, but we're taking him in for a follow up just to check in. we're hoping/thinking it's the botox injection that wore off and he had to kinda re-learn how to pee on his own. we're still cathing him at 12 and 4 daily and then leaving the cath in overnight. we're happy with the results, so hopefully it's still working okay for him too. and of course we've got some PT and OT appointments in the mix. we are so busy these days.. it's probably best that i'm not working anymore, just cos i'd have to be taking so much time off anyway.

madi is doing great, too. she's so spunky these days. my sister and i were going to take her to hands-on house last week, but the snow decided to ruin those plans. i will be SO happy when it is spring and i don't have to worry about snow ruining every thing. hopefully we can get a chance to take her soon and we'll actually make it there.. i think she would really enjoy it.

we've got a birthday party to attend in a few weeks, so i can't wait to see all of the kids together again. they are such a riot!

ugh, snow.

can you believe all of this crappy snow?! it's awful. we've been snowed in for two days and zac and i finally ventured out for a trip to walmart.. a lot of the roads are still drifted shut and there were a few hold ups.. but it was SO nice to get out of the house!

i should've known it was going to snow, because i had an exciting two weekends of birthday celebration planned. it snows EVERY YEAR on my birthday. i can't even remember a birthday that wasn't postponed or canceled because of this crap. this year was the worst. last weekend, my mom was supposed to make me my favorite dinner (lasagna!) because shweener got her tonsils taken out today. of course, it snowed.. then we postponed it to last night and of course, the snow drifts were so bad we couldn't get out. i'm celebrating my birthday with zac's family tonight, so at least it's not totally ruined.

madi has been enjoying the snow. she went sledding with "the boys" (tyler, andrew, and amadeus) before the second part of this crappy snowstorm hit and she had a blast. it wears her out though, because after every adventure into the snow, she comes back spent and ready for a nice long nap.

justin has been doing great. he has started to reach out for people when they talk to him or when they're about to pick him up. and he is doing much better with weight bearing (something PT was really wanting us to work on). it's not the best it could be, but every day is better than the day before, so i can't complain. he's now sitting up for longer periods of time unassisted. he can pull toys out of the basket when he's sitting and doing tummy time. also, when we say, "TOUCHDOWN!" justin will raise his hands in the air. i love it when he does that.. it is so freakin cute. madi used to put her hands together on top of her head when we said "BALLERINA!" when she was his age.. it reminds me of how cute it was when she did it. my kids amaze me with something new every day.

last week, i FINALLY got to meet kelly (the woman i spoke with over the phone who has a daughter w/spina bifida).. and she was so great. it was so nice to really talk to someone who knows what this is like. we've been very lucky with a lot of the situations we've been put in with justin, but just to know that there's one more person to rely on when times are tough.. one who really knows.. it's an amazing feeling. unfortunately, we didn't get to meet her daughter that day because she was at school, but she had brought some pictures for us to see. i loved meeting with her.. it was great. she brought us a parents guide for children w/sb and a cute bookmark. i can't wait for us to meet her family.