Lia's first PT session

She finally got referred by EI and is beginning her PT. He came last week to do his eval and when he walked in he immediately noted abnormalities. She has multiple postures, some that we hadn't noticed before or labeled as posturing. She often has her thumbs inside her fist (which should be absent by now), she lays on her back with her elbows flexed and her arms beside her head, she curves toward her left side, and her legs are hypertonic. We've always known about the hypertonia which is why we wanted her in PT.

Her entire left side is shorter than the right-her arm, leg, and torso. We hadn't noticed that before. Evidently every muscle is tight on that side from her shoulders down to her toes.

She was the first to roll over but only did it a few times and then stopped. She doesn't crawl, sit without support, roll over-she just lays there. She is clumsy with toys but has definitely improved.

We know she has brain damage and had been left to "wait and see." Well, we've waited and now we see that she's definitely being affected by it. PT wouldn't give ANY information at all in regards to prognosis or anything long term. I understand why as he really just developed his baseline, but it's frustrating nonetheless.

Part of me was just heartbroken that it's finally real and a professional is noting that something is wrong afterall. The other part of me is relieved as I feel like I've finally been validated. Everyone keeps telling me she's fine, and although I've wanted to believe that, my mommy gut has always known that she is not like most other babies. We always joke about her being "Lazy Lia," but sometimes I just want someone to say to me,"You know what, Danielle? You're right, that sucks."

The good thing is, we have noticed some improvement but she's just super slow about it. But there's improvement! And the ultimate good thing is that she's otherwise healthy, and super cute, too

These are not normal delays. These are due to her neurological issues, and quite possibly leading to a dx of CP. We knew she was at risk and it looks as though we might be headed that way. For the record, PT has not said this yet. This is just something we've already known beginning with the neurologist in the NICU.

I'm tellin' ya-it's a good thing she's so darn adorable

 

My DDs were in EI fairly early on (referral from NICU). They both had gross motor delays---they had PT/OT as toddlers & early preschoolers. One DD still has gross motor delays and gets PT/OT through the schools- she has a DX of mild hypotonic CP (trunk/legs).

It is FANTASTIC that they are starting PT NOW!!!! I was surprised at how much they could do for babies. Neither of my DDs were not sitting at 9 months. One DD was only rolling one way, she too had 'tucked' in thumbs/closed fist past when she should have and a head tilt. I did not notice it too much at the time, but now looking back you can see it in pictures. PT got them both moving more and also showed me how to do massage and stretches with them.

Here is our story: DDs were born at 31.6 due to DD2 in distress. Both were intubated, anemic, had RDS, and DD2 had low apgars. They had a standard NICU stay with a few minor troubles (apnea/brady-- feeding problems, etc) and stayed 4 & 5 weeks.

For the first 6 months I was told I was 'paranoid' that DDs were not hitting milestones. I was told 'they are preemies, they will catch up'- but I KNEW that DD2 was not just a 'sleepy' baby and DD1 had more than average reflux (she still has severe reflux and still has digestive problems today). After getting involved with EI and a pediatric neurologist, It was helpful to have a 'professional' team helping me and sharing ideas to help the girls.

DD1 caught up quickly and was fairly on par gross motor wise by 1.5 years with the help of PT- she has/had some oral motor stuff until about 2.5--but now is caught up developmentally preemie-wise (we are dealing with some other health issues).

DD2 still has gross motor delays & some social delays. She sat at 10 month, crawled at 13 or so and walked at close to 18---but not consistantly until closer to 22/24 months. She learned to run right before she turned 3. She just learned to ride a trike and hop (she is 4 1/4 years). She hits gross motor milestones, just 6-12 months later than usual. She was late to PT (3y11m) as well. As a baby, she tired quickly and we noticed a lot more weaknesses when she was sleepy/fatigued so it is a priority for her to get her sleep/naps (yes she still naps at age 4)- she requires MORE sleep than most kids her age. It just takes her more energy to do things. DD2 has had 2 rounds of PT through EI/insurance and 4 rounds of OT through EI/insurance. Now she is inPreK and gets OT/PT through the schools. She is doing awesome and will be in regular Kindergarten (w/ Spec.Ed support) next Fall. She is still hypertonic and has very low stamina, but she loves to dance and play! She has a very 'laid back ' personality and is sweet and affectionate.

It is hard to see your LOs not hit milestones, but by getting involved in EI you are helping them a lot!! Lots of hugs and I hope you have a fantastic EI team---I know mine was invaluble those first 3 years and so far the school system has been great as well!!

 

:hug: You know what Danielle, that sucks!! :grouphug: But, it is so great that you are seeing improvement!! :woohoo: Although I have no EI experience, I can imagine that a diagnosis is scary and a relief all in one.

 

Sorry you are going through this but I am glad you are seeing some improvement and are getting more information. I have no experience here but wanted to say thinking of you and wishing you good thoughts. :hug:

 

I'm sorry your worries were confirmed somewhat. :hug: I'm really glad you are seeing some improvement & I imagine with PT you will start to see even more, but I know that not having an actual diagnosis can be frustrating. You have a great attitude, though, and that will definitely be helpful to her as she gets older.

 

Thank you to all of you for taking the time to respond. I debated on whether I should post this as I'm still trying to digest the reality of it myself, but I'm glad I did. Sometimes you just need to get it off your chest, ya know? And believe me, I have enough on there already

She has grown to become a very pleasant baby who loves people and her surroundings. She has much to offer in many ways and I'm so thankful I was chosen to love her. I just want the best for her and right now she's getting it, so that is a great thing!

 

Danielle, that does suck. I'm so sorry you're going through this. :hug:

I love your attitude though, and I'm so glad you're getting PT for her. It sounds like she is a very sweet child. And now I think you need to post a picture for us so we can see how cute she is!

 

Danielle, hang in there. Month after month we look for little things with Will, our IUGR baby, to show signs of delays, etc. We're seeing a developmental specialist and we've been to a couple of appointments already, but all we're told is that they're still too young to see any major problems. When they were in the NICU, the neonatalogists told us that Will's brain was malformed and that as he grows up we'll just have to 'wait and see.' I'm sure you know how unbelievably frustrating that is to hear. I've tried to visualize every scenario in the book for their futures and their development, but I have to stop myself all the time and just remember to be in awe of every day we have. It's hard, darn hard.

Sorry to ramble, but this gives me an excuse to pass along something that helped me out the other day...I took Andy to the doctor the other day, just me and him. Andy really liked having mommy all to himself even though he felt like poop. I saw how happy he was just the two of us, and then I started thinking how life might have been if there had only been Andy. (Andy was the original embryo that little Will split from pretty late. Will, being a late split, didn't develop the same healthy connection Andy had and therefore became our IUGR baby. My whole pregnancy was stressful, extremely stressful. I worried about little Will day after day, ultrasound after ultrasound. Wondering if he was going to make it even another day until they were born.) Then I thought to myself as I sat with my content little Andy, what would the world have been like without Will? Just like your Lia, my Will is so darn cute. He couldn't be not cute if he tried My world would be a very sad place if Will hadn't existed. Through all the hardships, past and present, my Will and my Andy fill my world with undescribable joy. I can't imagine life without them both.

Love 'em, hold 'em, hug 'em, snuggle with 'em. They're worth every uphill climb, every worry, every challenge. They're always better than any expectation I could ever set for them. Big, big :grouphug: to you !!!

 

your words "chosen to love her" made me tear up, she is so lucky to have such a great momma! :hug: I have no experience but just wanted to give you some encouragement.

 

I'm sorry that you are dealing with this. I can only imagine how much it truely does suck. Lia is very lucky that you were chosen to love her. :hug:

 

Girl you should have called me!!! I didn't know this was going on! I know this must have been hard to hear! Just know that I am praying! I will tell the family tonight during devotions and my church tomorrow to pray. God is able my friend! Each and everything happens for a reason, this will only make you stronger. We know that little Lia is a fighter!!! She will fight thru this! Sometimes our lives aren't what we think they should be...believe me if I ever looked back and thought hey I'm gonna have twins and go thru all these things you and I went thru this past year..NO WAY!!! But God has a better plan, something much "bigger" than we could ever imagine! Something that will take us where He wants us to go! You are being used and you know this in ways God wants to use you and what you have been thru and what you are still going thru. I love ya girl! You know I am only a phone call away or now our blackberry message away

 

That was just the first of many appts you had with EI and they will show you how to work with your kiddos to help them progress just fine. my boys are TTTS Survivors too - born at 26w6d. Jaxon also has leukomalacia (brain damage), hydrocephalus that was shunted, Chiari malformation, and optic nerve damage - he is legally blind. We have had ECI come out since October and they did not expect a whole lot from him at first. Our PT changed after the 1st visit and the next one that came couldn't believe at how well he was doing just by my hubby and me working with him as the 1st PT suggested. Do the exercises with him as they suggest and you will get positive results at the next appointments. Also ask your pedi for any input to help him reach his milestones. Please do not worry - your baby will catch up. They say that at 2 years old, most everything evens out as far as motor skills. Way to go on getting EI out as soon as you did!!

Hugs to you!

 

also, remember that she is only 6 months adjusted and is only behind the curve a little. Preemies are a little slower at development that full-term babies (especially those w/ brain issues). Lia is doing good - she's already rolled over! Soon you'll be wanting her to be still and hush up her babbling so you have a moment of peace!!

 

Thanks She's actually 7m now (10 wks early), and with the possible PVLM it makes it more concerning. EI has been involved since about 4m actual, but honestly I don't think it has been much help. Our EI, though, is just a specialist-not a nurse, not a therapist, etc., so she finally referred us since it is now out of her realm. They promised us they would refer us if that was the case and they followed through so I'm very happy.

How is yours doing? Since we don't have an actual dx, I wonder what the future holds if it is indeed PVLM. What really keeps me feeling positively is that she is in fact improving. She's such a good girl And I agree, there will be a day that she will be trying me in ways that I might want to call Calgon

 

the referral is a step in the right direction. That's strange EI said they couldn't help her....I guess they are sending her to a developmental pediatrician? There is no telling what the leukomalacia will mean for her or anyone and that we should not be negative, at least that's what the doctors have always told us for our little Jaxon. How is it that she has not been definitely diagnosed? Has she not had an MRI to rule it out?

Our son is doing great all things considered. Our twins are now 10 months old (7 months adjusted) and Jaxon is rolling over and crawling forward commando style only for about 6 inches or so and then he just stops and rolls over to his back.

 

That's great about Jaxon crawling!

Lia was showing signs of pain (elevated BP, grimacing) when in the NICU at 10 days old so they sedated her to help relieve her of that. It depressed her so much that we almost lost her. They determined at that point that she had a sensitivity to sedation (Eve had had the equivalent amount for a surgery and did fine with it). Since there was a chance that they would have to sedate her for an MRI or CT, we all felt that it wasn't worth it to put her through it just for a dx that wouldn't change the outcome. The radiologist's report says that the findings are consistent with PVLM based on the head u/s that she had. The first one at 7 days said there was an area of echogenecity on the right side, the follow up a week later said it looked better, then the 30 day u/s said it was still there and they noted cystic formation, leading them to the report of pvlm findings. we decided as a team that we felt it unnecessary to put her through diagnostic testing at that time since it wasn't worth the possibility of losing her to the effects of the sedation. I'm sure we'll be facing an MRI soon but for now it's not worth it as long as she's receiving services and they help her improve.