Thursday, February 25, 2010

A moment

We just got back from our consultation/2nd opinion with orthopedics. REALLY liked this doctor, great bed side manner and very knowledgable. He had obviously taken the time to go through Alex's extensive NICU history before our appt and after talking to us had us get some scans of his hips and spine to review. the most concerning was the scoliosis. He showed us the scan and even to our untrained eye, it looked way wrong. We vaguely remember hearing this after he was born in the NICU about a deformity spotted on his spine. Honestly at the time that was hardly making the top 10 list of concerns so we just filed it away and thats been that. No one has mentioned it again and it went into the background.

The ortho said its very high up towards the neck and there is an extra verterbrea jammed in there, and there are several vertebrae all on the top of his spine that are completely misshapen, almost hexagonal looking, not stacked one on top of the other. Right now its not causing any known issues but has the potential to cause some severe issues as he grows. I'm not sure I understand it but the way it is compressing on the rest of the spine, if it continues to grow that way, could compress on one of his lungs. He wants to watch it through scans every 3-4 months for now and says its most likely to cause an issue during growth spurts (Infancy being one of them ofcourse). He said surgery is the only thing to correct it and where its located, it would be pretty involved. Obviously I'm just going to pray that this will just be a non issue as he grows and we can escape any of these issues and forget all about it again but I'm feeling pretty scared about it. Why do I feel like we get rid of one stressor (oxygen, potential heart issues) just to be traded with another? There ofcourse is nothing we can do with this information but worry and wait (which I feel like we've been trained in for many, many months). God must have forgotten that by nature, we do this pretty darn well,  we did this BEFORE our kids though God only knows what was worthy of our worry then. I certainly can't think of it now, oh except the will we ever have our family and all the things we had to do to even get here. Well anyway, maybe its time to learn another skill now??? Yes, I'm sorry I'm in that kind of mood....should have been a warning on the top I suppose.

On a lesser concerning note, we also walked in there pretty pumped up about how much "extra" movement he's been showing us when we rub his feet, etc. we always told ourselves that we wouldn't get our hopes up about him walking and that it didn't matter and certainly in the grand scheme of things, its last thing on the list. but I'd be lying if I said I didn't want this for my son. Anyway, he was really gentle with us but largely said the movement that we are seeing is likely more "reflex" movement, not muscle movement which is what he needs to walk, even stand. He reassured us its still too early to predict but did tell us several times he needs to be able to flex his knees "strongly" to really weight bear and stand for any length of time before we even worry about the walking part. He didn't say this but from his testing with Alex today, he didn't look very confident that this would happen for him. 

He also told us that he does have a dislocated hip, shorter femur bone making his left leg obviously shorter. (we have suspected that his hip was dislocated but no one before was able to clearly tell us this). We asked about treatment and he said they do surgery for this sometimes because its not 100% effective. They wait to see how mobile the child can really be before pursuing surgery. He said it will not impact his ability to sit up, crawl, stand, etc. If he was able to walk well, it would be something we could try but since its a surgery, obviously we wouldn't want to put him through something that wasn't going to change anything. again I felt deflated. He's really thinking that Alex won't walk.

 I wanted to shake him and say but I remember you from the NICU. I remember you evaluating my son there and you turning to tell me that you thought he would be functioning more like an L4 and then explaining clearly when I was obviously confused what the heck L4 meant and YOU saying "well Mrs. Rissberger, most L4 children will walk." Why would you SAY that and now feels like your taking it back? Why would you put that in my head??? and all this time I thought it didn't matter but subconsciously I always had that in my head. But I didn't say a word, I just teared up because I just couldn't hold it in.

Its not the most important thing, I  mean that when I say that and how I've always said that. But that doesn't stop you from wanting absolutely everything for your child. somehow we've built up all these little "tests" that we've done ourselves in getting Alex to move his feet/legs and without realizing it, just KNEW he would be able to stand/walk. And being reminded that its very possible he won't, well its not the end of the world certainly, but you feel the air go out of your tires a bit and you convince yourself it doesn't matter, it SHOULDN'T matter.....

The doctor said several times what a beautiful, happy, healthy and thriving baby we have. and oh my gosh, I will NEVER stop being grateful for him, proud OF him, LOVE him. I will NEVER forget what a blessing he is to us, EVER. He and his brother are our world!!!! But that doesn't take away my dreams for him, the way I want his life to be a bit easier then anticipated. somehow I have in my heart that standing, if not walking will pave that way for him and I can't help it, I'm human. I may need a minute just to prepare myself again. You can so easily forget when they are babies, lighting up your life by their smiles, laughter, babbling, you can forget for awhile that life may get challenging....until you have one of these appts that whip you right back to reality for a moment. oh right, he has SB, I almost forgot. I don't want more surgeries for my son, I don't want to think about VP shunts, bladder and bowel issues, spinal issues, or for him to always HAVE to be in a wheelchair.

 I know that none of us escape this life without being challenged in some way, but you hope that your children can just simply BE children for awhile without having to struggle right away. I feel like my children have had to struggle SO much right from the beginning and I want them to be free from that. They deserve that. Why can't you put those challenges to ME? Give them to me and take them from my son, even for awhile? Let him experience the joy of running around with his brother, his friends, carefree, innocent? Not to have to know so many places in a hospital, tests, procedures, worries. and then the walking, oh I know, I know and then what? take it away and give all of this back to him when? when would it be easier? and about the mobility stuff,  just because someone can use their legs doesn't make them automatically happier, right? look how many people have full use of their legs and are quite honestly walking around miserable. I know that if God has kept this Gift of walking from my son, he has surely given him many others in their place. I know that, I do. My son IS the gift, to me, to everyone around him, he is!!!!

Oh boy, I know this sounds terribly depressing and pity party making and I"m sorry. I am usually strong and positive. My boys need that from me, my family needs that from me. I will BE that. I think though every one needs a moment some times just to allow yourself to not HAVE to be the strong one. For a moment. For a moment to be sad, angry, whatever, before pulling yourself back together. so this was one of those moments for me and I thank you for allowing me to have it.

My sons are BLESSINGS. and Alex has defied every expert from even before he was born and in my eyes he will always do that. Without being unrealistic, I will grow that hope again in my heart. Whatever he wants to do, whatever he puts his mind to, whatever he is MEANT to do, he WILL do. I've always said and mean when I say it doesn't matter in the long run if he ever walks a step or not, I just want him to be happy. and as his mom, I need to be that model for him, I need to show him it doesn't matter, he can be happy no matter what his legs can do or not do. Or just maybe he is the one teaching me how because as I write this, he turns around in his exersaucer and blows me raspberries!!! 


Cassie said...

Hi Holli, I just wanted to share something with you. When Caleb was an infant he did not move his legs at all, period. Any movement he had was reflex only and even then it wasn't great. He is now 4 1/2 years old and WALKS with just AFO's and a walker (just for short distances right now, wheelchair for longer distances). My point is that doctors and therapists don't know everything. They try to fit our kids into some category and they aren't always right. Caleb is doing things that we were told he would NEVER do. He has gained movement and strength like you wouldn't believe and he gets stronger all the time. He has purposeful movement in his legs, movement that he didn't always have. So just because Alex isn't doing something now doesn't mean he can't or won't later...when he is ready. I just wanted to share that with you and hopefully encourage you a little.

Holli (and Mark) said...

Thank you for that Cassie! I think I just needed to get it out and already feel better! Awesome about Caleb, thank you for sharing that!!!!!

Leigh and Andy said...

OH Holli...My heart aches after reading this post. I was having one of "those" days on Tues. Greyson was laughing at my nieces running and I just couldn't take it. You are so right, God may have kept the gift of walking from our boys, but he has given them SO MUCH MORE! They are going to do BIG things in their lives...they already have. Hugs to you today...OH, and Cassie you have no idea what reading your comment has done...thank you thank you thank you! :)

Ben, Jamie and Joshua said...

Getting out what is on your heart is so important. I feel your pain and am there with you, Holli. I want to take Joshua's disabilities on myself and let him do what I dream of him doing. But our God knows best. And He will use our amazing, wonderful boys teach us and lead us to a better understanding of His plan. We just have to watch and wait and witness their lives...whatever the outcome is. And blog about the down times...because it helps other mommies of special kiddos feel less alone. :) Hope to see you soon!!!

Holli (and Mark) said...

thank you thank you guys, your comments make ME feel less alone in this and less guilty about writing when I'm feeling "less than". thank you so much, your support and friendship means a lot!!!!

Anonymous said...

The fact that babies are such physical creatures doesn't help put the importance of physical ability in perspective. Whether he can walk or not will always matter to you but when he is three and chattering away about his favorite things you will get a new perspective on the little person he is and the many wonderful things he can do. Hang in there! You have two lucky babies to have you as their mom.

caryanne said...

I could have written almost this exact same post just a year ago. We got Ben's CP diagnosis 18 months ago. And although I "accepted" what they told me, over the months I started to think that maybe he didn't really have CP...maybe it was just developmental delay due to prematurity and he was going to eventually be "normal". And then one day, the PT told me that Ben should be able to walk "some" by the time he was 5. And it was like she thought she was giving me good news! I was like FIVE YEARS OLD! In my mind I had him walking by the time he was 2!

And I came crashing back down to reality.

Now I realize that my story isn't EXACTLY like yours...Ben should be able to walk SOME by the time he goes to school...we think. At least that's something. But it is so much less than I had in my mind and it was VERY hard to take. I struggled for quite a few months with this reality check.

I can't wait for Alex to grow up some and show you more of his makes all this so much easier to bear. It really does. When Ben laughs and talks and giggles and shows me how awesome he is, I forget that he can't walk. I truly do. I just see Ben. I don't see the CP. I can't wait for you to have this.

I love that you are showing us this side of you. Having a child with a disability is not all fun and games. It's real. And it's hard. And you're going to struggle. I think by showing this side of yourself you show the other mom's and dad's out there what is REAL. They connect with you because you show your true self. If all they ever see is happy and optomistic Holli, they think that they are a failure because they are negative sometimes.

So thank you. You have validated the feelings that I have on a somewhat regular basis (although not near as often as in the early days).

Chris, Liz, and Baby Em said...

Oh Holli I'm so sorry for everything you had to go through with these appointments. Your post is so moving and honest. I'll be praying that the scoliosis is asymptomatic and that Alex won't need surgery.

You love your boys so much of course you want to give them the both world, and take away any suffering. It's heart wrenching for anyone to try and stifle your dreams. Sometimes I think Dr's forget what their words and "predictions" mean to the parents. You've always been courageous, and Alex will always know that you are his perfect mommy. He has your same courage, and has already accomplished so many feats in such a short time!

It's good to get your feeling out, and YES! Regrow all the hope in the world for him. He's such a happy boy...he's certain to always have happiness with your (and your families) love and support.


Anonymous said...

Holli,please accept our apologies for not realizing what a difficult time you had today at the dr's appt. We should have been listening more closely. But to tell you the truth, when we are with the boys, we pretty much block everyone and everything out! We realize that we have all the joys from/with Alex and Nicholas and very little of the worries and heartbreak. When they are in our arms or playing with their toys,(or giving us those very big smiles) all we can feel is pure joy and delight in everything they CAN do! Their disabilities, limitations, as well as your concerns and need for support, simply fly out the window.
So, again we aplogize for not reading your signals better. We love you and Mark so much and we thank you for all that you do for our wonderful grandchildren.
Grandma Karen and Grandpa Fred

Erin said...


I liked your honesty and openness about your feelings in this post. I have weeks where I am feeling very down and angry and then some days I am so content and happy at home with my kids. It is good to know that I am not the only one out there that has bad days.
I feel so happy and lucky to have my twins. I love being a "twin mom" but it is very hard for me watching Ella act like a typical two and a half year old; running around, playing, talking and to have William still at a 5 month level. It HURTS..... I try not to compare them but how can I help it being home with them both all day. I love William SO MUCH for who he is and will always love him no matter what he can do but that does not mean I don't have dreams for him. Sometimes I have dreams that I can just set him down like I do with Ella and he walks away to play. I wake up and reality stings..........but dreams evolve and change. If he can't walk I will dream new dreams for him.
And yes, sometimes I want to stop being the strong one. I want to be taken care of and held. We can't be strong ALL the time!!!
I think you are a fantastic mom and your boys are beautiful. Keep up the good work Holli!!!

cfallone said...

I know I may sound like a broken record after reading all the previous comments, however, I have to share. First of all, WE are allowed to be angry, sad and tired. I forget that myself. I am always trying to stay strong for everyone. Then, reality hits hards and I break down at some point (usually before Mia's surgeries).

Mia has one femur shorter than the other as well. She is NOT weight bearing yet but we just got her fitted for AFOs and she will be getting a gait trainer soon. She is 15 months and cannot crawl or stand but we are pushing forward with the hopes that she may walk by the time she is three. If she doesn' be it... but nothing will stop me or you from trying:) You are an awesome advocate for your boys and Alex is going to surprise all, he already has.

Mia also has, what they call, hemivertibrae. It sounds a lot like what Alex has. They are all misshapened and not in a line which has given her scoliosis as well. The Dr. describes her vertibrae as puzzle pieces instead of need little stacking blocks. The difference is that hers is in the center portion of the spine so he is thinking she will be less impacted. She is also being monitored every 4 months.

I guess I just want to let you know that I am here for you ANYTIME! Call me whenever! I will be your sounded board and I will not judge. Although our journeys are not exactly the same, they have a lot of similiarities. Hopefully, we can support each other through the tough times.

Hang in there,

ps - sounds like you are in need of a movie night!!!!!!

Holli (and Mark) said...

thank you everyone and Carleen, it is striking how many things our babies have in common, isn't it and us as moms of twins with each one of us with a "healthy" one and one with special health issues and challenges. It reminds me that God really does hand pick the people in our lives. Thank you and YES definitely for movie night!!! P.S. somehow I had missed your last post on Mia but she looks so sweet in her helmet!!! talk soon!