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!! 

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!!!

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!!!!

*Smile*

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!!!!!!!!!!!!!!

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:) http://danmelbenrush.shutterfly.com/

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!!

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 does...so 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!!