Friday, October 15, 2010

We had our First Steps six month reevaluation this week. It really couldn't have gone better. Our OT, PT and First Steps coordinator came. The only thing we wanted to change was adding the extra PT hours as the physical therapist at the neurologist’s office suggested. However it was a little touch and go as to whether we would be approved for extra time because Luke was a total rock star!! He rolled over from his back to his tummy for the first time during the meeting!!! We couldn't believe it! (He has been rolling over from tummy to back for awhile now.) He was pushing up and holding his head up for really long periods of time on his tummy. He's been able to hold his head up when he's on his tummy for awhile but he has a hard time keeping it up for long periods. He also usually fusses when he's on his tummy but that day he was smiling and showing off for his audience. Our coordinator is great - she deferred to us and the PT as far as the extra PT time goes because he wasn't really showing the need for it!!!! At this point we're going to go ahead and add 2 hours a month. Amy, the PT, will go to Luke's daycare for those 2 hours.

So far the OT and PT have been doing many of the same activities working on Luke's large motor skills. It sounds like they're going to start branching apart and Erin, the OT, will be working on some fine motor skills now. The next 6 months are going to hold a lot of changes for Luke. He's been doing so, so well and we hope and pray that he keeps making such awesome progress!!

Saturday, September 25, 2010

6 month checkups!

Luke had a pediatrician appointment, Parents as Teachers (PAT) and neurologist within the last two weeks.  All news is great news!!  Happily, we have nothing too exciting to report.  Our PAT educator, Lori, brought a 6 month checklist and the only thing he wasn't doing was rolling over (grrr!).  Our neurologist was impressed with Luke's progress. 
The only concern everyone has is his hatred of tummy time.  The physical therapist that we saw at the neurologist visit suggested that we increase our PT time to an hour per week as opposed to every other week like it is now.  I was a little concerned about adding time because between OT and PT we have something every Tuesday night.  It's a really hard time of night to coordinate both boys and Luke is really tired.  I was hesitant to add another night on when Luke seems to be making really great progress.  I also LOVE LOVE LOVE our PT and she has limited late hours and I DO NOT want to switch therapists.  So the PT from the neurologist office suggested having our therapist go to daycare every other week which sounds like a good plan to me. 
Our therapy is coordinated through First Steps and we have our 6 month evaluation coming up. We're going to tell them about the suggestion from neurologist and see what happens!! 

Tuesday, September 14, 2010

Lots of laughter!

Just a quick update!  I took this video of Luke laughing yesterday!  I thought it was pretty funny.  He's doing SOOOOOO well!  He's sitting up for short amounts of time unassisted.  He rolled over (OK, just once but he finally did it!!!).  He's eating great, making eye contact, responding to his name, blowing raspberries and........he's just doing great.  We couldn't be more pleased!!  We have pediatrician AND neurologist coming up within the next 2 weeks - lots of positive thoughts, please!!!

Tuesday, July 27, 2010

4 Months Strong!

Luke continues to do GREAT!  We had his 4 month pediatrician appointment on Friday.  He weighs 17lbs. 9 1/2 oz!!!  He is 27 inches long!  He is such a BIG GUY!!  He is getting much more steady with his head control.  We are working on strengthening his arm support right now, sitting up and rolling over. 
Things are going so much better than we ever dreamed.  I can't believe this all started just over 5 months ago.  It seems like an eternity and yesterday all at the same time!  When all the possibilities of what could happen with Luke were laid out in front of us we assumed that I would probably have to quit my job to stay home with him.  We have no idea what the right decision is but right now it seems like it is going back to work.  Two months ago I couldn't WAIT to go back to work.  Things were crazy around here!!!!  However, things have settled and now while I am looking forward to going back to work it's going to be really, really hard.  I think it will be good for Luke to be around other kids his age.  I also am confident that the daycare and grandma will work with him diligently.  Probably more than I could with my little 'helper' around!!!!  We've decided that we'll play it day by day and if he's not making progress or takes a turn for the worse, we can always change our plan.
Our big concern - which has nothing to do with the macrocephaly or polymicrogyria - is that he won't take a bottle.  Hopefully he'll get hungry enough to start taking it!!  Fingers crossed, please!  We did start him on cereal this week.  It seems like he's taking it in but it's hard to tell with all the mess:)!!!  Hopefully if the bottle situation doesn't improve we can supplement it with food during the day. 
We have our 6 month neurologist appointment in September.  Hopefully we'll have no big news until then.  We are very happy with how Luke's been doing.  Thanks to everyone again for all of your love and support.  Send positive thoughts our way next week when all the new changes take place when I go back to work!!!!

Thursday, June 17, 2010


We had our first neurologist appointment today.  It went really well!  He agreed with everything the OT and PT have already said about Luke's development. 
*We need to continue to work on his core strength by using the BePod (Bumbo - little infant seat) to have him work on sitting up. 
*We need to continue to work on head control - although this is getting MUCH better!  He even picked his head up off the floor and held it for about 30 seconds this week - yeah!!!
*In the beginning, the therapists were worried because he didn't have the grasp reflex like infants should have.  Well now we're working on having him unclench his fists!! 
*He still has a preference for looking over his left shoulder when he's laying down.  That can create tightness in muscles and cause problems with several areas so we are continuing to work on that. 
BUT overall he was very pleased with Luke's progress.  We were sooooo glad not to get any bad news.  It was really great to hear the neurologist say he thought Luke was doing so well!  Whew!!!  We have to go back and see him at 6 months in September.
We also met with a geneticist today.  I think I've already mentioned that they did a few blood tests on Luke while he was in the hospital to check his genetic make up to see if he had any other abnormalities besides the brain malformation.  So far all the tests have come back normal.  Honestly, I didn't REALLY know what that meant - normal, that is.  And I didn't really understand for sure why we were meeting with genetics.  I thought it was mostly to find out how this happened to Luke.  Now we understand a little better!!
The big blood test that was done was called a chromosomal array.  It's really fascinating and I still don't fully understand it.  They looked at his entire DNA to check for any other genetic issues besides the polymicrogyria.  His DNA is normal.  So now they want to do another test that is specific to kids who have the type of polymicrogyria that Luke has - the bilateral frontoparietal (I just wanted to write it again to see if I could spell it without looking it up!!!! :))  It's a blood test that looks at a specific gene abnormality that has been linked to kids with the type of PMG that Luke has.  The benefits to finding out if that gene is abnormal would be that it could tell if Dan and I are carriers.  It would also give the doctors more information about the PMG as far as possibly giving us a clearer picture of how it will affect Luke.  The geneticist said that if he has this abnormality she can look at other kids who have his specific form of PMG AND that specific abnormality and tell us what common problems/delays/issues they have.  So it might tell us a little bit more about what to expect for Luke.  We haven't decided if we're doing it or not.  We're waiting to find out if our insurance will cover that specific test.  It would be interesting to know if Dan and I are carriers. 
It sounds like we'll be meeting with the geneticist once a year for now. She said that new tests come out all the time and they would continue to meet with him to see if there had been any advances in determining how it could affect Luke.  (I think....I might still be a touch fuzzy on this genetics thing...Sorry if some of this doesn't make sense!!) 
I have to say, too, that Luke was LESS than a Rock Star today for BOTH of his appointments.  He made it clear that his lung development was MORE than adequate by howling his head off for BOTH appointments.  Sweet.  Typically he's pretty easy going and he was super happy until we had to undress him to get his weight.  It all went downhill after that!  Poor guy - he was so tired but he managed to battle through! 
We were pretty pleased with the day.  We consider it great news that he is doing so well so far and has so many people looking out for him. 
We'll keep you updated with all of our great news!!!!!!!!!!!!!!

Wednesday, June 2, 2010

Luke had his 10 week appointment last Thursday. He is 15 lbs 2 1/2 oz. He is measuring 25 inches long! Still growing strong:) He's pretty much wearing 6 month clothing now!! The pediatrician didn't have a lot to say - he's eating well and still doing what he's supposed to be doing as much as a 10 week old baby should be.
He has been doing well with his OT and PT appointments. He's been raising his head a little. When we have him on his tummy for tummy time he doesn't work particularly hard!! He's pretty laid back!!! We are working on that. He is getting more and more solid as we are picking him up and holding him up. I have to keep reminding myself that it's going to take him awhile to get good head control due to the macrocephaly. When he's laying on his back, he tends to favor looking over his left shoulder so we are keeping an eye on that. His pediatrician checked his head to make sure he wasn't developing any flat spots - which he isn't - so that's good. The picture is of him doing his therapy with his PT, Amy. Amy and Erin (OT) pretty much do the same things right now.

Our neurologist appointment is in a few weeks. I think it's going to be rather anticlimactic from what I have built up in my mind! I am hoping he's going to be able to look at Luke and examine him and tell us what his future holds. I guess that would be true if we were going to a fortune teller, huh? I have a feeling it's going to be similar to Ben's due date - it will come and go with no big news. I guess no news will be better than any bad news, though.
That's about it for now. Thanks again for checking in. I updated our family website with LOTS of pictures so if you have several hours to spare, check it out:)

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Tuesday, May 4, 2010

It's All Good!

I suppose I've gotten a little lazy but we have no real news...well, that's not true.  Luke is doing GREAT.  He had his 6 week appointment yesterday with the pediatrician although he'll be 7 weeks tomorrow.  He's 13 lbs. 8 oz. and 24 inches long.  His head is also continuing to grow but she's not alarmed by it.  He's eating great and sleeping well - at night!  He's starting to smile more often.  He's working on lifting his head up and holding it up.  He's cooing.  He's using his eyes and head to track.  He's doing really great.  I can't believe how quickly time is flying by!
We had our meeting with our First Steps Coordinator, the OT and PT to write Luke's IFSP (Individualized Family Service Plan).  Our coordinator asked me what our goals were for Luke for the next year and really for his lifetime.  I somehow managed to cap it into a few minutes but really, think about it - goals for a lifetime?   I want him to walk.  I want him to talk.  I want him to laugh and play with his brother.  I want them to get in trouble  together.  I want him to drive and do well in school.  I want him to climb on top of the furniture and counters and ignore me when I tell him to get off.  I could've gone on and on.  Then we narrowed it down and focused on major milestones as his goals for the next year - we'll work on holding his head up, sitting up, rolling over, crawling, pulling up, walking, eating solid foods, etc.  With any luck he'll meet all of those goals.  The OT and PT will continue to see him on opposite weeks.  So we'll have both but every other week.  They talked about what they've observed and what they will do within the next year to help Luke meet his goals. 
Still no signs of seizures from what we can tell.  They may never happen (fingers crossed!).  I wish that was something the doctors could give us a 'yes' or 'no' on.  Yes he will have seizures or No he won't.  I hate worrying about every little movement but it's getting easier. 
He's doing good with his big brother - or I guess that is the other way around.  Ben seems to mostly like Luke except when he cries - then he gets a loud 'Quiet Luke!' from his big brother.  Ahhh....brotherly love! 
Thanks for checking in on us!  We'll continue to post updates but hopefully we won't have a lot to say very often!!!

PS!  I think I figured out how to add e-mail subscription!!  Look on the top right - I hope it works!!

Tuesday, April 6, 2010

Going on 3 weeks!

Tomorrow Luke will be three weeks old!!! I can't believe it's only been 3 weeks since he's come into our lives. It has been a BUSY 3 weeks!

Luke has now had OT & PT two times. He has been cooperative with each of them once! It's hard to get a newborn ready to be awake, fed and happy at certain times of the day. Anyway at this point they're both working on the same things. They are working on head control, core muscle strength, palm reflexes and visual tracking. The first time the PT came she said that his upper thigh muscles were a little tight. She also noticed that his grasping reflex wasn't 100% there - babies should be born with an automatic grasping reflex. He does do it but just not all of the time. Today I asked her what that means and she basically said it could mean that he has a neurological problem - which we already know he we work on it. He's doing pretty well, for a 3 week old, with head/neck control. When he gets really mad on his tummy he can pick his head up and move it from one side to another. When he's not mad he doesn't even try - I think we've got a mellow little guy on our hands here!

Next week the OT and PT are going to start switching off weeks since they're basically working on the same skills at this point in time. As he gets older they'll branch off and do different activities with him as needed.

We also met with our home coordinator for First Steps last week. The OT and PT that have already seen Luke are First Steps providers so depending on what services they deem necessary we can keep our OT and PT. AND since the hospital already started providing OT/PT then First Steps can move a little faster since the evaluations have already been done.

I went to talk to Ben's daycare about our uncertainty for what's going to happen with both Ben and Luke next year. When we put Ben into daycare I wasn't happy about having to do it. I was thinking that in home care would be a lot better for him. However, I LOVE his daycare. It makes me sad that Ben may not be there next year because he really enjoys it. Also, I want Luke to be able to have that same opportunity. So I explained to them what was going on with Luke and all the million possibilities for what may or may not happen with him. They were very understanding and said that they have had kids with special needs before. Then the owner called me at home to talk about Luke's situation. She has personal experience because she had a child with special needs. It was nice to talk to her about Luke. Also, again I had the nice feeling of KNOWING we aren't alone in this. She assured me that if we need to/are able to send Luke to daycare next year they will make every effort to accommodate his situation and learn about his diagnosis. And since she is familiar with services for special needs children she will be a great resource for our family. We're still waiting a little longer to see how he's doing to decide on my work situation for next year.

We had our last visit from Nurses for Newborns this morning. Luke weighed in at 10 lbs. 10 oz.! He's growing quickly and becoming more alert every day. We are becoming more relaxed with Luke. It's hard not to look at every arm twitch/funny sound/weird newborn thing as a possible seizure. As he gets bigger and more in control of his body and surroundings it's getting easier to relax and enjoy our big guy!

It's all going great so far.....fingers crossed!!

Saturday, March 27, 2010

The Waiting Game

Thanks for all of the comments & everyone checking in. I haven't updated because, thankfully, there's not much to report. We continue to play what I've come to think of as the 'waiting game.'

Luke is doing really well. He's back up to birth weight and nursing well. We're not seeing much different newborn behavior than we remember seeing with Ben - well except for the fact that Luke sleeps and Ben was NOT a sleeper. So of course instead of appreciating a sleeping baby I over analyze....something I'm going to have to get control over. Every weird sound/movement he makes makes me tense up and wonder if something is coming...Babies, as we all know, make a LOT of weird sounds and movements!!!

Next week he has his first OT appointment and I believe PT, too. I just found out that they come to our house which makes life a lot easier for me! I'm really interested in finding out what they will do with a two week old! We also have our initial evaluation by the First Steps program to see what kind of services Luke will qualify for.

Otherwise we're just adjusting to being a family of four. I thought when I started this blog that you would be able to sign up for e-mail updates when I update the site - but that is apparently not working. If anyone knows how to tell me to adjust that, let me know. I was hoping it was something you could just get an e-mail from when I had news....

Saturday, March 20, 2010


We are HOME after a completely & totally uneventful hospital stay!! Yay! Luke has been sleeping, ummm....ALL DAY!! It doesn't look like the beginning of a very sleeping night but we'll take it!
We have some appointments coming up with OT & PT. We also will be meeting soon with First Steps. We found out today that Nurses for Newborns will also be visiting us. We are thankful for any help we can get to assure the BEST for Luke. I'll keep you updated as we find out more about Luke and how BFPP affects him. Right now we are totally enjoying our newborn as the neurologist keeps reminding us to do!
Thanks again for all of the kindness you have all shown us. We are feeling like very lucky people right about now!!

Friday, March 19, 2010

Better and better!!!

Everything is going so much better than we ever expected!!! We finally have Luke in our room with us - just us! It's perfect. It was a long afternoon waiting but they were trying to finish up all the testing on him in the NICU. This poor little guy has had a LOT of pin pricks but he's handling it like a champ!
Our neurologist did a final check up this morning and still had nothing important to note - yeah! Someone at Children's set up our initial appointment with him in June when we'll also start meeting with OT and PT. They also set up his initial pediatrician appointment next week. Someone else is getting us set up with First Steps which is essentially, from what we understand, a service that comes to your house and decides what special needs your child has and does treatments such as OT and PT and other evaluations. I cannot believe how much help we have had. In our first meeting with the neurologist, neonatolgist and our nurse they kept stressing that we were not alone in this. In my mind I was thinking that it was easy for them to say that but they don't go home with us!! Now, I totally see what they mean. The support we have received here at Barnes & Children's has been absolutely amazing! I NEVER dreamed they would go out of their way to help us cover ALL of our bases and really support us. It has made this week so easy and we are so comforted.
He still hasn't really met his brother yet for more than a minute - which might be safer for Luke!! Hopefully that will happen tomorrow either here at the hospital or at home. We're not sure when we're being released yet.
Thanks for all the prayers and kind words. Keep it up - it's obviously working!! We are excited and looking forward to our first sleepless night with our little guy!!!

Thursday, March 18, 2010

No news is good news!!

Everything is going so, so well! We met with the neurologist & pediatrician today. The MRI did show that it is indeed the bilateral frotoparietl polymicrogyria. We were expecting that news. What the MRI also showed was that there was no other damage in his brain area. It does not look like it affects the back part of his brain or the inner parts. Also, his brain stem appears to be normal - as I was researching I saw several indications that a lot of PMG kids have smaller brain stems. This doesn't change his dianosis and the challenges that lie ahead but it feels so good that he's been given such a strong and healthy start. It is comforting to know that other areas aren't affected and we continue to remind ourselves that while we never wanted to hear this news - sooner than later is better so we can start supporting him.
He continues to show NOOOO signs of seizures and he is eating very, very well!! Everyone says he looks like a 3 month old and as I hold him I cannot believe this huge, perfect human being came out of my tummy YESTERDAY!!!
BEST PART OF ALL!!!! Luke is being released from the NICU tomorrow to come stay with us!!! NOT in the NICU at Barnes but WITH US!! We'll have to move rooms but that is OK! We are both really excited.
You have no idea how comforting it has been for us to read all of your words of support & love both with the comments and e-mails we've been getting. We are really feeling lucky to have such wonderful family & friends in our lives!!
Love, Mel

Wednesday, March 17, 2010

Our Lucky Luke!!

He's here!! He decided that it was time to make his grand entrance yesterday. Well, really, today. He was born at 1:58 a.m. Weighing in at a hefty 9 lbs. 8 oz. and measuring 23.5 inches long, Luke came out howling!! I was so relieved to see him, hear him and be able to hold him.

The team at Children's was amazing. There were A LOT of people on hand to greet Luke and check him out. They were worried about seizures because he was making some funky movements with his hands so he did get carted off to the NICU pretty quickly.

He is doing really, really well!! He is able to eat so as far as we can tell - no swallowing issues. It looks like the weird arm movements were just the weird arm movements of a big, big boy shoved into a tummy not meant to hold that heftiness! Eeek. He is not showing signs of seizures!! It is everything I could've hoped for. I believe that these things could appear at any time but right now they're not there. Another victory....At this point he seems like a typically developing newborn - a HUGE typically developing newborn!!

I finally got to go see him this morning at 10:30 and he was on his way out for his MRI. The nurse was really sweet (or just felt bad for this crying, crazy mom) and let me hold him for a few minutes before they took him away. I was having some issues with blacking out today so unfortunately I didn't get my chance to go see him again until about 6:30 tonight. But then I had all kinds of time with him!! It was great!!

He did have both of the tests that they wanted him to have today. We haven't been able to catch up with the doctors yet - largely due to the fact that I was confined to my room. Boo. We are hoping to talk to them tomorrow and are hoping for either good news or no new news.

We are so, so happy with the way things are going at this point. He is beautiful and strong and we couldn't be more proud to have him in our lives. I'll keep you updated after we hear any news from the doctors....Fingers crossed!!!

Friday, March 5, 2010

Just the beginning...

I am almost 37 weeks pregnant. At 20 weeks my husband, Dan, and I found out that we were expecting our 2nd boy. Given the history of boys on Dan's side of the family, we weren't surprised! We also found out that he (Luke, we later decided) had a very, very large head - also common with those Rush boys. We weren't really concerned but it was large enough for my OB to recommend a meeting with a perinatologist and an ultrasound.

Three ultrasounds and four perinatologists later Luke's head was still growing (now defined as macrocephaly) and they couldn't find any real problems associated with it. However none of the perinatologists that we saw had ever seen a head as large as Luke's without there being a problem. The last set of doctors we saw noticed that three of the ventricles in his brain were slightly larger than they should be. Honestly, I didn't even know that there were ventricles in the brain!! They decided that we should have a fetal MRI to get a clearer picture of his brain. We had pretty much accepted that we were going to get much of the same information after the MRI which was a lot of chin scratching and baffled looks.

I went in for the MRI at Children's Hospital on February 8. By the way - an MRI is not as comfy and easy as it looks on House! That same afternoon we got 'THE' phone call. Luke was diagnosed with an extremely rare brain condition called Bilateral Frontoparietl Polymicrogyria (BFPP). Basically it means his brain didn't form the right way.

Dan and I were both at work and both on the phone. We were stunned. As the doctor talked the only words I was able to write down were bilateral, seizures, mental retardation and developmental delays. At the end of our conversation I came to enough to get the full name of his diagnosis spelled out for me. I've only recently learned how to say polymicrogyria (PMG) clearly!! It's a hard word to spit out!

We spent the evening digesting this totally unexpected news, doing a little research and crying (ok, that may have just been me!). The next couple of days we started filling people in and trying to find out more about BFPP. There's not much out there that's easy to understand. Luckily we had a few friends and a sister-in-law who braved the Internet more than we could to find out some of the down and dirty info on his condition.

Armed with a TON of questions (thanks Amy & Sue!) Dan and I met with a neurologist and a neonatologist at Children's Hospital. We were assigned a nurse advocate, Meg, (I don't know if that's her official title but she was/is awesome) to sit in the meeting with us and make sure the doctors were speaking in common English or she would translate for us. We didn't really learn a lot of new information - better or worse. It sounds like it manifests itself differently in each individual. It's largely diagnosed after birth when developmental delays become noticeable or other problems arise. We do know that it can cause seizures, mental retardation, developmental delays and possible swallowing issues among many, many other things. From what we understand there's no real way to know how it's going to affect Luke until we're living our lives day by day together and see what happens.

Together we decided that the best plan of action for Luke was to change hospitals and deliver at Barnes so Luke could be transferred to Children's NICU shortly after birth. He'll have an MRI of his own so they can get a clear picture of his brain. He'll have a blood test to see if they can determine if it was genetics that caused this to happen (it sounds like the kind he has is largely caused by both parents carrying the same bad gene). They'll monitor him for seizure activity and watch him for any other problems that could arise. The neonatologist didn't expect any big problems after birth. We're hoping that all will go well and Luke will go home with us when I am discharged.

We met with my new doctor today at Barnes (my doc doesn't deliver at Barnes). It's really fun to switch up the whole game at 37 weeks!!! We had an ultrasound that showed that he's still growing (8lbs. 5oz. currently - YIKES) but overall nothing has changed for the worse. I consider that a small victory! The office scheduled the c-section for March 22. We all want to wait as close to the due date as possible to make sure he's fully developed in every way just in case we do run into any problems post delivery.

So now we wait...We wait to see what happens after he's born. And we wait to see how this thing affects our son(s), our family and our lives. We've had an outpouring of love and support from family and friends which has helped tremendously. Hopefully we'll have no more news for the next few weeks. Please keep your fingers crossed that Luke stays put until as close to the 22nd as possible!

Thanks to everyone for your love and prayers. We feel your support and are truly blessed to have such a fantastic army behind us!