FYI, Many apologies for the lack of info. I've been without my computer for any length of time for about the last 6 weeks---it's KILLING me!! Anyway, I promise to update soon.
Hi all, Simon saw his opthalmologist on Monday who gave him an excellent report. She was impressed with his eye alignment and his responses and said his optic nerve looked very good. Dysmorphic, but normal dysmorphic. Try and figure that one out! BUT, it's not dead or white so it is working!!
We went to school on Tuesday morning to visit the classroom. We stayed a little more than one hour and it went really well. Simon was alert, responding, listening and seemed to enjoy the visit. I'm really looking forward to him starting in September. Beginining in June we will go once a week for school and then he'll start officially when school starts.
Tonight Simon is back at U of M for an overnight sleep study for his c-pap machine. Hopefully we'll know right away if it isn't going to work. It seems like it will be a lot of trouble for him to wear it and to gain from it. I'll let you know.
This was exciting for me! Alex's Biology teacher asked me to come and present PKS to the class as they are studying DNA, karotypes, etc. I got to talk for a whole hour about PKS and Simon! I was in heaven! The kids seemed to be very receptive and also asked questions. Mr. Ritter enjoyed it, would like to make it an annual thing, and wrote the other teachers about it also. What a great way to raise awareness of PKS and also about handicapped children. I hope it gave them some insight and compassion for these little angels. :)
GoodSearch: Please consider using GoodSearch (www.goodsearch.com) for all your internet searches. We get a penny for every search conducted under our name-PKS Kids. If you load the GoodSearch toolbar its even easier (and its safe to load!) Enter PKS Kids where it says “Who do you want to GoodSearch for”, click verify and search! PKS Kids will be your default charity unless you change it. (But why would you want to do that!) It’s as easy as that! Pass this info on to anyone who would want to help!
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Get some to keep handy! Or contact me at gertyp@sbcglobal or 269-781-9221 to place an order. I will try to keep several greeting cakes on hand for those last minute needs. ALSO, I can offer fundraisers through this company. Your group will earn $2.25 per cake sold.
The second company is Noah’s Ark Animal Workshop. These are adorable stuff-your-own animals. There are many to choose from and you can also purchase clothes, accessories, voice chips and more! Again, I will try to keep a few on hand for last minute birthday gifts, etc.
The second company is Noah’s Ark Animal Workshop. These are adorable stuff-your-own animals. There are many to choose from and you can also purchase clothes, accessories, voice chips and more! Again, I will try to keep a few on hand for last minute birthday gifts, etc.
My website for Noah’s
I can also do a stuffing show for your children or your organization. Fundraisers are a possibility too!
Just call me 269-781-9221 or email me firstname.lastname@example.org if you have any questions.
Hello--there's a new video of Simon on the video clips page. I wanted to film his new type seizure for the neurologist. So you can see it too if you want. I know that sounds a little obscene, but it's so hard to show and tell the doctors what you are seeing when you're in the office. They never do it when you want them too! It's where his head keeps dropping and his arms flail out.
We saw an orthopedic doctor today. Although we only spent about 4 minutes with her we learned that Simon's hips are in good shape, that he has no signs of scoliosis yet, that she believes his sitting is coming along and is partially due to poor trunk control and amazingly enough that she already has a PKS patient!! Our first doctor to have one!!!!!!!!!! That thrilled me more than the others almost!! Too bad about patient confidentiality LOL! She also prescribed AFO's for his little feet too, so I will talk to PT MaryAnne about that!
Next Monday, The Opthamologist!
We had a visit at U of M on Tuesday with the audiologist and the neurologist. Simon is getting new hearing aid molds. Ranjani tested his hearing, and he does respond better with the aids, but not at the level she thinks he should. We both feel that it's more likely the brain just not telling him to respond, not that he doesn't hear the sound. Watch for lime green molds to come!
We also talked quite a while with Dr. Hoban about both Simon's seizures and his sleep apnea. First, the seizures. He is on a full dose of Topamax and full beginning dose of Lamictal and I've seen no improvement---in fact, I've seen just as many seizures and some new ones start. (Atonic seizures) We're going to watch for 2 weeks to see what happens and then call them back. Two things we may be looking at if the current meds don't work are: Depakote (which is a good med for these seizures, but has some liver implications) and the Ketogenic Diet. I don't know much about this yet, but it is a high-fat diet that works well in controlling seizures. It's not without some risks also, so it's just a maybe. This was our first neuro visit with this doctor. We just transferred from our former and really, we're both so glad. He listens so well and is never rushed. He doesn't mind my many questions either!
As far as the sleep apnea goes, Simon has a mild case. His oxygen levels drop to 90% and in a normal sleeping child the minimum is 92% so he's barely out of range. Dr. Hoban said there is no documentation to what complications untreated sleep apnea can bring, so he recommends us at least trying a C-Pap machine. Simon will go in for an overnight in the hospital to have it set up, adjusted, monitored and all. We may leave the next morning knowing it will never work! We may have it for several weeks or months and decide it isn't working. Simon sleeps with his mouth open and that means the air will probably go in his nose and right out his mouth so that's a problem to look at. Additionally he is a stomach sleeper and rolls around a lot in bed so he may not keep it on. But, it may give him a more rested sleep with less moving. So, we just try it out! That will happen in the next month or two.
There's today's news. Hope all is well with you.
Here are a few pictures from therapy at the school today. Also click here for a video version!!
Here is Simon with MaryAnne, his PT. She's the one who loves to swirl him around and "take him for walks" on this scooter!
Isn't he cute???
Hi to all! Just wanted to post a few pictures of Simon and his progress.
Here he is in his stander. I put him up to the table with toys hoping that he'd hit one and then hear it play and want to hear it again. No go this time, but repetition is the key!!
We have LOTS of musical toys that you have to bat at or push a button.
Now here is Simon doing what I've tried to describe previously. Looks like he's actually trying to sit up! His abs are much stronger than mine, LOL! I guess these are his version of Pilates. Makes me think a little more that balance is a greater issue than strength in the sitting up wars.
Here he is flat and whoops, there he goes.................
Look! Head, shoulders and legs are up in the air. I know I can't do that for more than 2 secs!!
Hope all of you are healthy and happy.
God bless, Gretchen
Hello! I know I should update this more often (I get mad when other people don't update their sites!), but sometimes, I just don't know what to say.
Today, I actually have something to say. Simon and I went to visit his school again on Tuesday. This time we got to go into the classroom and meet with the teacher and aide there. We did the morning group with them and also visited the sensory room. Talk about a wake-up call! It was a good visit and the staff is awesome, but wow, this is for real. I don't know if that makes sense or not, but it made me realize all over again, Simon is handicapped and this is going to be his life. On the other hand, I know that school is going to be good for him. They will stimulate and exercise and really help him all day long. Which he needs.
Ok, I'm a mom and I want Simon to be doing these things so I'm going to trust the experts. THEY said it, not me. The past few times Sunny has seen Si, she starts growling in his ear. Well, sure enough, give him time, Simon growled back at her! Receptive play and one not initiated by him is wonderful. Also, Jim and I have been caught Simon staring at his hand. This sounds ridiculous and so ordinary, but for this child it's BIG. From what I heard from the therapists is that until he knows he has hands, he won't use them. Hand-gazing is very elementary but very necessary. I've caught him 3 or 4 times with it in front of his face and so has Jim at least once. Simon is also fingering things more. He'll grab his shirt and bring it up to his mouth or rub it with his fingers. Now, this one sounds far-fetched, but Mary says it's true! And I gotta believe Mary!! When we got to school the other day Si was "talking"--his normal ohhh sounds. She started saying Hi Simon, Hi. She swears he changed his tone to say Huh (the H sound) like he was saying Hi back. I didn't catch it and Mary doesn't say things just to make me feel good, so we'll see where that goes!
So, that's life with Simon right now. He's working in his stander more often--and lasts about 30 minutes at a time (usually just once a day). We saw the developmental pediatrician last Friday. She thought by his behaviors he was at about a 4-5 month level. We did learn that he still has a bit of a "palmar grasp" reflex left in his hands (leaves usually by 5-6 months developmental age) and also he still has the "plantar reflex" in his feet. (His toes curl up when the bottom of his feet are touched or rubbed). This should leave at approximately an 8-15 month age. Usually a child won't bear weight while he still has this reflex. So, that explains why Simon doesn't bear weight. I was telling the therapists that it doesn't change anything, but it's nice to know there's an answer to WHY!
I'll try to update again sooner, but it may be just babble, LOL!!
There are so many, many things to be thankful for. I'm blessed by family, friends, my children and yes, even and especially little Simon.
I'm posting links to two stories that will break your heart.
This is about a little girl named Julianna. She's relatively healthy, she walks and communicates, enjoys playing and running around. But she was born with a extremely harsh form of Treacher Collins Syndrome. Look at the suffering this little girl and her family go through every day and say a prayer for her. http://www.firstcoastnews.com/news/news-article.aspx?storyid=28372 (Make sure you watch the video and check out the additional links on the bottom of the article)
The second story is equally sad for a different reason. Here is a healthy, beautiful, happy, baby girl whose body has been taken over by aggressive tumors. Not even 2 years old and she'll probably not live to see Easter Sunday this year. http://www.kyriethome.blogspot.com/ Pray for her mom and dad and family, and pray that little Kyrie will be at peace and without pain.
So, why does this happen? Yep, it's a question most of us ask about something or other every day. Sometimes it's why are we stuck behind the slow guy in the wrong lane at the grocery store and sometimes its why is my son so handicapped he'll probably never move independently. I don't think we'll ever know the answer, but I do know that God is here with us protecting and loving us. There are things to be learned and gained from every person's story. We gain patience, learn tolerance, enjoy the little things, see the beauty inside and learn to love with all our hearts. Purely and deeply.
So say a prayer for those who may be or seem less fortunate than us and say a prayer of thanks for the many and true blessings we all have.
Easter blessings to all of you. May the glory of the risen Lord touch you all!
(btw, check out the new and improved www.pkskids.net !!)
I'm just going to blog a little bit today.
On our support group a mom posted this in reply to another poster's note. (Follow that??) She said: Like one mom told me a long time ago," I don't care if you call my kid purple, if it will help him get the services he needs, it's just a word"!
That sums it up! One of the hardest things I've found about having a special needs child is that nobody knows who offers what to whom! There are sometimes that I will call five different places to get the answer to my question. I start here and end there and usually I don't get an answer or I find out later it wasn't the correct answer, that I need to call place number 6! It's extremely frustrating!!
Some services are by county, some are by state. Few are federal. The services are called different things in different places and offer different benefits. Some people get their homes modified by some branch of the govenment, some don't qualify for that (with the same diagnosis!) or can't find where to get the help they need!!
We're in that boat now. Within a year, we'll need ramps to get Simon in and out of the house with his wheelchair for the school bus. Within 2 years, he'll be getting too heavy to lift in and out of the tub, carry upstairs to bed, and carry through the house. Our home is older and has small doorways.
Anyone out there who knows the system? Who knows who I should call for what? Contact me!!
Call my kid special or handicapped or even purple! As long as he gets everything he needs to be healthy and well-cared for, I don't care!
Since nothing is new with Simon except his ear is draining again, you get new pictures and a little inspirational story. Sorry to be so boring!
(Em took this sleeping one-- she loves to see him curled up like that!)
We learned something about Simon sitting. Even though he hates it, when he has this little "bar" or something similar on his lap, he balances so much better. Notice no one is holding him in either picture! If he's in a good mood, he might sit a whole minute!
He loves his fish tank screen that Grandma Giesen bought him for Christmas.
And finally, Simon wearing his PKS Kids shirt! He looks awesome in it :)
Now the story:
When your hut's on fire
The only survivor of a shipwreck was washed up on a small,
uninhabited island. He prayed feverishly for God to rescue him.
Every day he scanned the horizon for help, but none seemed
forthcoming. Exhausted, he eventually managed to build a little
hut out of driftwood to protect himself from the elements, and to
store his few possessions.
One day, after scavenging for food, he arrived home to find his
little hut in flames, with smoke rolling up to the sky. He felt
the worst had happened, and everything was lost. He was stunned
with disbelief, grief,and anger. He cried out, " God! How could you
do this to me? Early the next day, he was awakened by the sound of a ship
approaching the island! It had come to rescue him! " How did you
know I was here?" asked the weary man of his rescuers. " We saw
your smoke signal," they replied.
The Moral of This Story: It's easy to get discouraged when things are going bad, but we shouldn't lose heart, because God is at work in our lives, even in
the midst of our pain and suffering. Remember that the next time
your little hut seems to be burning to the ground. It just may be
a smoke signal that summons the Grace of God.
Ok, I spoke too soon. The day after I wrote the last note, we got 3 inches of snow. Typical Michigan weather, I guess! Simon's been doing so well the last few weeks. He is so much stronger, even though it hasn't translated into anything concrete. He got a new stander (his third!) and it's the best one yet. Yesterday he was happy in it for 25-30 minutes.
Natalie is always very helpful by trying to distract Simon from the tortures he's enduring!!
He had therapy with Kathy (Vision) last Friday. Kathy did some ot/hearing/vision things. She was working with Simon with a switch. We're trying to teach cause and effect. He hits the switch and the music plays. Haven't seen the lightbulb go on yet, but he does enjoy when the music plays. He smiles right away!
Check out the video page for a "music video"
2 weeks ago he had therapy at DKDC (this is where he'll attend school in the fall). Check out how excited he was about that!!!
Really--he loves when they put him in these swings and hammocks. He usually quiets immediately and looks intent. Just got sleepy this time I guess!
The time of travels to U of M are approaching. We have 5-6 visits in the next two months. As far as the sleep apnea goes, Dr Hoban (the neurologist) wants to see if Dr Lesperance (ENT) thinks removing the tonsils/adenoids will help. If she says no, then we'll discuss if there are other options.
Take care! (Check out the PKS Kids page---we have our awareness bracelets!!!!!!!!!!!!)
Are you enjoying this spring day? It's about 70 degrees here---what a treat!! We got the results back from Simon's sleep study. He has obstructive sleep apnea and partially unobstructive apnea (I do believe this is what he said). The good news is that his oxygen levels don't decrease--but the spells do wake him at night. We're waiting for an appointment with the neurologist to discuss treatments, if any.
I wanted to pass this information on to anyone who might need it. My sister-in-law Becky just started an Autism organization called Connor's Autism Project (after her son Connor who does have Autism). It is to benefit children living and attending school in Saginaw Township, MI. Just maybe someone reading this will be helped. Becky is a tireless advocate for Autism, I wish I had half her dedication, patience and energy!! We attended a cocktail dinner party and show over the weekend that she organized. It was a HUGE success! Click the graphic below to view the Connor's Autism Project website and I will also add it to my links page.
Autism Awareness Month is in April.
I'd love to have the same type fundraiser for PKS Kids, but I don't know if living in a small town like Marshall would make it a success. If you have thoughts, email me at email@example.com
Hello! Simon had his sleep study done last Thursday at U of M. Don't know any results yet, but will post when I do. He dealt with a cold and double ear infection last week but is feeling better now. We went to playgroup yesterday.
This is the coolest thing! I randomly found this blog when searching PKS Kids. This man is a professional artist and also has a son with PKS. I read Ben's story back when I was pregnant with Simon, but never met the family. Check out http://benandbenniewaddell.blogspot.com/index.html. Bennie (dad) and Ben (son) do artwork together to sell! Isn't that the greatest thing? (Maybe some of you saw the interview with Paula Zahn--I didn't) Bennie sells his personal artwork on a separate site (linked from the blog) and at shows and sells the father/son work on the blog. Proceeds of the Ben & Bennie artwork help Ben's school. I'm also adding this link to my links page so it doesn't get lost.
All my best to all of you. Hey, spring isn't here yet. Wish harder!!
Some thoughts to consider--
Think about them one at a time before going on to the next one .
1. Falling in love.
2. Laughing so hard your face hurts.
3. A hot shower.
4. No lines at the supermarket.
5. A special glance.
6. Getting mail.
7. Taking a drive on a pretty road.
8. Hearing your favorite song on the radio.
9. Lying in bed listening to the rain outside.
10. Hot towels fresh out of the dryer.
11. Chocolate milkshake (vanilla or strawberry).
12. A bubble bath.
14. A good conversation.
15. The beach
16. Finding a 20 dollar bill in your coat from last winter.
17. Laughing at yourself.
18. Looking into their eyes and knowing they Love you
19. Midnight phone calls that last for hours.
20. Running through sprinklers.
21. Laughing for absolutely no reason at all.
22. Having someone tell you that you're beautiful.
23. Laughing at an inside joke.
25. Accidentally overhearing someone say something nice about you.
26. Waking up and realizing you still have a few hours left to sleep.
27. Your first kiss (either the very first or with a new partner).
28. Making new friends or spending time with old ones.
29. Playing with a new puppy.
30. Having someone play with your hair.
31. Sweet dreams.
32. Hot chocolate.
33. Road trips with friends.
34. Swinging on swings.
35. Making eye contact with a cute stranger.
36. Making chocolate chip cookies.
37. Having your friends send you homemade cookies.
38 Holding hands with someone you care about.
39. Running into an old friend and realizing
that some things (good or bad) never change.
40. Watching the expression on someone's face
as they open a much desired present from you.
41. Watching the sunrise.
42. Getting out of bed every morning and
being grateful for another beautiful day.
43. Knowing that somebody misses you.
44. Getting a hug from someone you care about deeply.
45. Knowing you've done the right thing, no matter what other people think.
Hello everyone! Simon is definitely getting stronger. He's starting to lift his head and shoulders up when he's laying on the floor face-up (like he wants to sit). His home teacher, Sunny, commented today that it's gotta be balance and not strength that's the issue because his trunk really seems strong. Time will tell! I've got a bunch of new pictures here, and again some new videos. (Check the videos page!) I like to add the videos because others can see how Simon acts and his behavior quirks!! It may help another parent out there.
PKS Kids is up and rolling!!!!!!! This is so exciting for me. We have a store that has products with our logo: www.cafepress.com/pkskids and we also have our website. It needs some work and a lot more added, but we're functional!! www.pkskids.net.
We are also going to sell PKS awareness bracelets. They will be available for soon and priced at $2.00. If you'd like one or want to sell some in your school, office or the like, please let me know and I'll mail you some as soon as they're ready! All the money will go to PKS Kids.
Who's ready for spring?????????????
God Bless all of you!
Here he is propped up over a stool for leg and arm strengthening. I stuck the mirror there, but I don't think he noticed anything.
More neck and back exercises on the ball
And here is he sitting up on the stool, pretty much unsupported except for for balance. Doesn't he look so big in these pictures???
He's laying over the stool to help build his arm and leg muscles.
I love this picure, Mr. Cool just hangin out! (No, he didn't put his leg there by himself!!)
Here is Jim whistling at Simon. You can see his hearing aids aren't in. He sure likes listening to his daddy. He perks up, looks right at Jim and usually starts smiling too!
Hi everyone! Here are a few newer pictures of Simon. He did really well at therapy this morning! Mary had him in a little boat that rocks, and his head and trunk control were really good! (Check video out - click here) I can tell he is so much stronger than even 6 months ago, but where is he going with all of this??? Is it cognition? Is it a balance issue? I wish someone had the answer! We're going back to DKDC next week for therapy in the classroom. Mary thought he may even be able to start school for the summer period. That will make me very happy!! Oh, and if anyone has an idea how to keep his hands out of his mouth, send that my way too!!
Here he is waiting for big brother Alex to get off the plane from Germany....doesn't he look happy to see him again??
So here is Simon listening to some music on his headphones. He just happens to be listening to a beautiful German lullabye CD his new friend Astrid sent him. He really enjoys music and seems to like this one a lot!
Ok, here's Simon and Mary. Mary is putting Simon in the
rocking boat I mentioned above.
Look at how great he is sitting there all by himself!!!!!!!!!!
Love to each and every one of you!
Whoops, almost typed 2006. All is well here, we've been fortunate to avoid most of the colds, flu and stomach stuff floating around. I was a bit sick before Christmas and everyone else has been fine!
So what's new? Not too much at all. Simon went for a sleep study consult on Dec 22 and the doctor determined him a good candidate for a sleep study. That will happen at U of M in probably February. We go back to the audiologist and the opthamologist on Jan 22. Both are routine check ups although he does need new molds for his hearing aids. We had Vision Therapy today. His vision abilities are so bad. Although the eyes are structually fine, this CVI business really is a mess. Kathy also said today that it seems like he doesn't know his hands can do something. Which is true and summed it up nicely. We need him to realize he has hands and that they do work!!
So, that's about it. We've visited school (Doris Klaussen Developmental Center) twice and we hope to go once or twice a month until he goes to school. Last time he was there he WOWed us!! He responded so well to all the equipment and to what they were doing! I'm taking my camera next time! We hope he may start school in April or May. I think it will be really good for him!
Happy New Year!!!!!!!
Hi everyone! Simon turned 2 on Sunday. WOW, I can't believe 2 years have gone by since he came into our lives. My emotions have done complete turnarounds a number of times since! Most importantly I've learned the real meaning of "pro-life". Simon has brought a lot of joy to me and our family. He is who he is and that brings more than I could've imagined! (Different but more-if that makes sense) Do I want him to not have PKS? You bet! I would love to see the boy he'd be if he were "typical". But I can't even imagine that because he isn't and has never been. He's just always been SIMON. Drooling, silly, spaghetti-noodle Simon. He smiles and my heart falls in love with him, he "talks" (Which is more like a loud constant chant--hard to describe) and I shake my head because he's so loud and won't be quiet, he fusses when we try to make him work, move, do more and I say, Yep, that's my son--just like my other kids!! The future doesn't always look bright, but God will see us through as he has over the past 2 plus years.
Here are some pictures == note the fussing I'm talking about by the birthday cake!
Love to all of you!
Hey there, it's almost Simon's birthday! He got a new stander to use about 2 weeks ago...he's doing really well in it. I swear that his limbs are getting more tone. I hope his trunk follows along so that he'll sit. Same old request from Mom. Here is a picture of him in his stander as well as a couple of his brother and sister.
Here is Alex with the nice big doe he got last week!
And Natalie totally enjoying herself in this box. What a hoot!
We had big 'ol party on Friday night for Natalie's 3rd birthday (which is actually 11/6). She was so cute and actually friendly! She wore an Aurora princess dress the whole time and acted like just the princess too! Pictures to come!
Halloween went well--until I deleted all the pictures off my camera :( So, I dressed up Simon and Maddy again and still have to take pictures of Em and Natalie with their costumes on. Leave it to me! Anyway, here is a picture of Simon to start with.
There's another fundraiser option for PKS Kids for those of you who like to scrapbook. A consultant with Creative Memories is donating 10% of her profits to PKS Kids. Let me know if you have any questions! http://www.mycmsite.com/sites/cammiegray
Love to all! Gretchen
Ok, so I'm a drag lately. I think I've just burned out because Simon isn't doing anything!! Seriously, I want to make this point. I really believe that Simon will be very handicapped. His progress is so so slow. Not that he won't improve or won't eventually do more than he is now. But he will not likely get as far as I had hoped. Heck, if he does, AWESOME! We'll celebrate each victory that he does achieve!! But in the meantime, I'm trying to be realistic and I feel okay with that!
I forgot to mention that his skull x-rays were normal--no premature fusing of the sutures. That's a big relief. If there would have been that fusing, he most likely would have had to have skull reconstruction surgery. Yuck!
I went to a parent support meeting today. It was sponsored by Early On. It was so nice to meet other people, hear their stories and tell them out story. It helps me so much to just talk. Talk talk talk!! I wish I could afford a live-in psychiatrist!!
Hello all, just thought I'd post two new pictures of Simon at therapy with his girlfriends! He sure loves his gals! Doesn't he look like he's right in the conversation?? I'm also posting a new video on the Video page. Have a great day!
I have some pretty spectacular news to report. (At least from the PKS point of view!) We are now an official non-profit organization. PKS Kids (filed in Philadelphia) is our non-profit name. We are working on all the particulars of the organization now. We hope to have our website up and running in just a few weeks as well as our logo, brochures, flyers and more.
If you work for a company or a foundation that makes donations to non-profits such as ours, please let me know! We will be working on some major fundraising efforts before year end. Donations to the organization will help families obtain therapies, additional medical conferences and much more.
This is a huge turning point for Pallister-Killian Syndrome and I hope it will go a long long way in making us a household name.
It's a beautiful fall day today! We went to U of M again today (2nd time this week!). Here's what's up...
Monday, we saw Ranjani who is Simon's audiologist. Since the tubes have been inserted, Simon is in the mild hearing loss range (about 40-45db), so that is truly good news!! Ranjani turned down the hearing aids to compensate. She (and we) still have a hard time knowing whether he hears at times and doesn't respond due to his development or if he doesn't hear it at all. She is going based on the ABR and the little he would give her during the test on Monday. (He didn't want to cooperate!). Next we were off to Dr. Maya--the opthamologist who did his eye surgery. She and her assistants thought he was doing very nicely with the recovery and the eye stability. We won't see her again (nor Ranjani) until January. At that time, we'll talk about whether the correction of the eyes was enough or if he needs more.
Today we saw Dr. Kasten for Simon's annual cleft lip check-up. All that was fine, lip, etc were healing great. We talked about Simon's severe underbite. When Simon is 3, he will go to their cleft clinic. There he will be evaluated by plastics, speech, hearing, dental, orthodontics, etc. Age 6 would be the earliest they'd try any orthodontic intervention and if that didn't work, perhaps they'd look at surgically realigning the jaw. Around age 7, they'll begin dental x-rays to see when they want to repair the alveolus (which is the cleft gumline). I asked about his head which is still a little off-center even after the helmet correction. He agreed that his right side was a little flat and his left ear was a little low and back. He then questioned if Simon had had a CT scan at the time of the helmet. He hadn't. Dr K was feeling around Simon's suture lines which have been a mild concern of mine for about 6 or 8 months. Every time I bring it up to a doctor they are all fine with his head, but he agreed that there could be a chance that the coronal sutures had fused too soon or improperly. He sent us for x-rays today and he will be calling in a few days to let us know the results. Of course, there is a chance that Simon just has an odd shaped head!! We'll know soon and I'll let all of you know too. If nothing is wrong, we won't see Dr. Kasten again until Simon is 3 years old.
Not much to talk about. Here is a picture of Simon in his bumbo...see how good his head control is when he's not tired out? Otherwise it's tilting back. He is getting stronger little by little. We're working on hands and knees too. And we met our new PT MaryAnne this week. She is going to bring a stander next time she comes to see if he's ready for it. That's exciting for me. I hope he can do it! Also, I'm putting a new video clip on the Video page. It isn't great, but it's something. I'll try and get some more soon! Love, Gretchen
2 weeks ago, my cousin in Minnesota held a Home Interiors show to help with Simon's fundraising. I sent along a note of thanks for the guests to read and thought I needed to put it on here also. So many people continue to show their kindness in so many ways, but especially by praying for Simon and for asking about him whenever I see them. My biggest fear in having a handicapped child (especially one who is mentally handicapped) is that people will be afraid of him and in turn afraid of or sorry for us. I want people to know Simon and be comfortable with him--even when, in the future, he may look and act different from them. I love to talk about Simon and explain Pallister-Killian Syndrome to anyone who wants to know, so please NEVER be afraid to ask ANYTHING! I am never offended by any question--no matter how "nosy" it may seem to you. (It won't seem that way to me!!) Being open helps me and I think it also makes it easier for everyone who knows Simon. So here is my thanks:
To all my wonderful family & friends~
Two years ago (almost exactly!) when my unborn baby was diagnosed with Pallister-Killian Syndrome (what is that??), I would have laughed and then cried if someone told me I would feel so blessed. But it’s true! Simon’s birth has opened many doors and many windows for me:
~An appreciation for families who are worse off than we are (financially, emotionally, medically).
~A new tolerance and patience for all those little things that are usually so annoying.
~A love greater than I could imagine for this little child who may never even “know” I’m his mommy.
~New friends around the world!
~Amazement for what total strangers will do to help out someone they don’t even know.
~A true realization of the importance and support of FRIENDS and especially FAMILY!
Simon will surely be very handicapped, especially mentally. I believe I will see him walk but there is no guarantee of that either. I’m still not sure God chose the right person to handle this job, but His love and guidance get me through each and every day.
Thank you for offering to help Simon tonight. Even if you don’t buy anything, I know you’ll say a prayer for him to be all he can be and that is better than anything else!
I love all of you and wish I could give y’all a big hug right now!
Hi everyone! The redness in Simon's eyes is just about gone. The stability in the eyes seems to be very good! I haven't seen the eyes drift outward at all and just rarely do I see them turn inward!
We celebrated Maddy's 8th birthday over the weekend. Now Natalie is raring to have her birthday, LOL! I don't know if she can wait until November :) School starts next Tuesday and mostly the kids are excited to go back. I'm ready myself. This is my first summer as an at-home mom and I think my kids and I are getting a little tired of one another! They like it much better when I'm at work during the day :)
Simon had his strabismus surgery this morning! It went very very well according to the opthamologist. What they did somehow is to loosen or alter the outside eye muscles. Sometimes they tighten the inner muscles as well, but she wanted to leave those alone, hoping the outer ones would do the trick. There is a small risk of over-correction and they eyes may turn inward somewhat instead of drifting out like they were. Right off the bat, I saw a nice improvement in them staying aligned. The left eye does seem to turn in a bit, but she said overall it takes 6-8 weeks before they eyes and muscles are healed, aligned and working where they should be. HOPEFULLY, we won't see any over-correction!!
He also had an ABR (which is best done under sedation). This is a bone-conducted hearing test. Although we don't have the official results yet, the audiologist said Simon shows to be at a mild hearing loss (conductively, at least!) and when our regular audiologist calls, I'll put the final results on here. Since Simon suffers from a mixed hearing loss, I need to figure out how the whole picture lies.
I also started a new job today! I'm a library assistant at Olivet College. I work Monday-Thursday from 4:00 pm to 9:00 pm. It's great that I don't have daycare costs this way, plus I can still do all of Simon's therapies and doctors appointments! It's a small step in the right direction for us! I'd love if it turned into something full time!
Love to all of you!
Here is an update that I just posted on my group website. Just kind of an overall of Simon at this stage. Here some new pictures too at the bottom! Enjoy your day!
Hi! Repeating my post from a day ago so that I could add a couple of articles: http://www.stemcellresearchcures.com/Giesen%20Testimony.pdf and http://www.detnews.com/apps/pbcs.dll/article?AID=/20060720/POLITICS/607200390/1040/LIFESTYLE03. Here's hoping these embyros (lives!) won't be destroyed!! We hope that the vote on August 8 goes with Tim Walberg who is against research on these embryos. I don't want this to be my soapbox but I also believe in this is worth talking about!
Hey, lots of happenings in the Peters & Giesen homes!! Here is President Bush vetoing the embryonic stem cell research. Check over his left shoulder (on the right of the screen) http://video.msn.com/v/us/msnbc.htm?g=26cdae98-c2c9-464c-ac26-fcff2907645b&f=00&fg=email . The tall handsome guy in the dark suit is my brother David. He and his wife Stacy have a son, Frank, who was born from a "leftover" frozen embryo. http://www.nightlight.org/snowflakeadoption.htm They are a member of this Snowflake organization and they were there with other Snowflake babies. They got a personal individual meeting with President Bush. Pretty exciting!!
Frank who is 18 months!
I forgot to mention how much fun we had in DC and Philly. Here is a goofy picture of Simon at the zoo.
Here is a picture of our nephew Connor and his new dog, Bongo. They are home from training and doing really well! I'll let you know how the therapies and assistance goes for Connor now that he has the dog.
By the way, Simon came through his surgeries today perfectly!!
Well, we have a short break in the heat wave today, what a relief. Busy week for Simon--he has EI therapy today and a PT appt on Thursday and tomorrow he gets his tubes in his ears and has a small repair done on his lip. He goes into "surgery" at 11:00 Wed morning. He's also cutting another molar and working on some other teeth too. All in all he's doing just fine though!
Try to look at the video on the Video Clips page. I upgraded my site, so everyone should be able to view it now. Sometimes you have to play it through a couple of times before it plays right! I'll try and do a couple more soon!
I just added some more pictures from the conference to the PKS Photo Album. Thanks for checking things out!
Check out PKS Face2Face Conference for updates on our conference!! God Bless all of you.
We are having perfect, beautiful summer weather--what the heck am I doing on the computer???? Anyway, not much to report for Simon. We got him the Bumbo seat and I think in just a week or so he has really improved his trunk strength! His OT said today--Simon I think you're going to be a sitter! So, we may be closing in on one hurdle We continue to work on improving his joints through joint compressions and positioning. There are 2 or 3 different things we do each day. Simon has to work SO hard at everything, poor little guy, but he's a very content soul. We also work (or need to work more on) chewing, vision, hearing, movement & balance (training the vestibular system) and just helping him be acclimated to what goes on around him. He is getting much better at that and is much more attentive to what is going on around him!
I returned last week from the funeral of my Uncle Roman. He was a wonderful man and he will be greatly missed by all his family. Thank you for your prayers for him and continued prayers for those he left behind. Eternal rest grant unto him O Lord, and let perpetual light shine upon him. May the souls of the faithful departed through the mercy of God rest in peace. Amen.
Hi everyone! Had a visit or three to U of M yesterday. Simon had new impressions taken for his hearing aids, then it was down the hall to neurology. The neurology visit was just a routine check-up. She said Simon looked and acted very healthy, was growing nice and really has no major issues (other than the delays and vision). We are keeping the seizure meds where they are for now and will probably have an MRI late this year to check out the optic nerve, but otherwise, we're good to go with her until after the MRI or next year.
Following that, we went to see a pediatric PT. Simon has been without a true PT with Early On since last June when his retired. The OT has been working with him, but we're concerned about falling behind so we thought we'd see one. The issue with Early On will hopefully be resolved in a month or so; they're having a hard time finding anyone to fill the position. I've been writing note after note to the powers that be, so keep your fingers crossed! The PT said he's a long way from being on his hands and knees due to his very low muscle tone. He's not really ready for weight-bearing yet either. We got exercises to do and hopefully can borrow a few pieces of equipment from the EI program. I'm learning quickly that nothing "special" is inexpensive although some items are covered by insurance. I also decided to break down and order him a Bumbo Seat. I think it will be awesome to have and the company is working on a larger one for special needs children, so we can order that one too when Simon outgrows this one. This visit wasn't all bad, because Simon is moving on his own and trying a little to sit (he did so with his hands propping him for the PT for as long as I've ever seen him!!), but he has a big battle in front of him.
Thank you for all your thoughts and prayers and also if you've bought candy and/or candles for our fundraiser!! There is just over 1 month until our conference. I'm so excited!
This isn't an update on Simon, but a special request. I would like you to pray for 2 special families. The first is a family in Scotland. Their little boy who had PKS, passed away last night, most likely from pneumonia related complications. He was 4 years old.
Also, many prayers for strength and healing for my Uncle Roman. He is suffering from a brain tumor and treatment isn't possible. He and his wife have 11 children (yes 11!) and they live in Minnesota.
I know God hears all our prayers, so I thank you very much. You're all in my prayers too. http://www.caringbridge.org/cb/visitAPage.do (type in the name romanbarten all one word).
We were very lucky to be able to get a news interview that aired on 2 local stations! We (our support group) are working hard to gain recognition of PKS. In this and other potential interviews, that is our hope. To teach the medical community about this syndrome and to give hope to other families of disabled children. I'm hoping that perhaps other stations will respond too.
Blessings to everyone!
We were back in Ann Arbor yesterday for a visit to the opthamologist. It was a positive visit which felt nice. I asked her to review the notes from our visit to the retina doc back in November or so. She said some good things including that it was too early for any judgement to be made regarding Simon's vision and that the color of his optic nerve couldn't even be called pale or showing pallor. (Which is what the retina doc said). She said that it didn't warrant true concern on her end at this point. She also said that his astigmatism is almost gone!! She is going to consult with another doctor about whether or not Simon should have an MRI, but she doesn't think it's necessary. We will see that doctor (a neuropthamologist) on June 7.
Also, we have 2 surgery dates for Simon. On June 28, he will have tubes put in his ears, have an ABR and also have some scar tissue on his lip corrected which resulted from his cleft lip surgery. We are also hoping that we'll be able to have his tear ducts probed. Then on August 22 or 23 (I can't remember which right now), he will most likely have strabismus surgery. At this point, we see that happening, it won't if his eyes have grown stronger and straighter on their own. At that time, he may also have tubes put in his tear ducts if the probe in June doesn't work. Dr E. (the opthamologist) thinks the probe might not work due to the bone structure of Simon's face, especially the nose area.
On all my paragraphs I try and link odd medical terms to websites explaining them. Just hover your mouse over words you think might link somewhere else and it should let you know if it's hyperlinked.
We got to go out to breakfast today with my State Farm friends. We get together once a month to catch up. Today there were 25 of us there.
That's our big news for the day! Hope yours was happy and calm.
Hi everyone! We are back from sunny, hot beautiful Florida and for once came back to pretty decent weather! I hope everyone had a beautiful Easter. Our trip was very nice. We drove down to Naples and the kids did well in the car (thanks to a DVD player!). Simon and Natalie were especially good--after about 9 hours though, Simon would get a little fussy and want to stretch out. He really seemed to enjoy the breezes and the fresh air. He likes being outside although the direct sunshine makes him uncomfortable sometimes. We spent one day at Disney World on the way home and although it was crowded, the kids had fun. I'm going to throw some new pictures in the WebsAlbum also.
Simon had a visit with the audiologist yesterday. He really flatlined his typmanic test, so I know the fluid is worse in his ears. She isn't happy with his responses or his progression, but both could be do to the cognitive rather than the auditory skills. He can't communicate what he hears so he may be hearing more than we know. The aids are doing their job, but he may need stronger ones. We go next week to talk to the opthamologist, maybe about strabismus surgery. I hope so. He still will be getting tubes in the next couple of months.
The conference is going on as planned in July and any funds we continue to receive will either go to equipment for Simon or to the formation of the non-profit organization. A huge thank you for all the donations.
Spring has sprung in Michigan, HOORAY!!!! The robins are here and the peepers are peeping! I love that sound, it totally means spring to me!
That's it, I'm just excited about the nice weekend we had!
Well, let's see. Simon has a icky cold right now along with his sis Natalie. They both have noses that won't stop running. In therapy (which didn't go so well today due to the cold) we're still working on sitting and weight bearing. If he gets a stander, he will do awesome, his weight bearing is really improving. The boy has the strength to sit, but his balance is awful. And I don't really know how to improve that for him! I don't know if it's just something he needs to get on his own or if it's visually related. There is just always something to think about!! He cut another tooth finally (they sit just under the surface forever!) and that makes 6. He's cutting them near to schedule, so that's something I haven't had to worry about as delayed teeth abruption is common in PKS. Oh yes, we're always working on auditory and visual stimulation too. He's starting to track light and some objects much better! Also, he's getting more exploratory with his fingers and is patting things (usually just whatever happens to be under his hand--he isn't "looking" or reaching for anything). More and more I just plain old believe that cognitively Simon doesn't have a whole lot up there! I think he'll do better physically and we will have to work harder and push more to get him to do things. But, that's what makes Simon Simon! He's a cutie bug who is well loved. God is good, and who knows, things can certainly change and improve!
Love and Blessings,
Here he is practicing some sitting!
Just trying something new! I have a new camera and it shoots video, so I'm trying a few clips of Simon. Please let me know what you think or if you can't view it! Below are new pictures too!
Simon's appointment yesterday went well. Meaning that he showed them his seizures. He had so many within 2 1/2-3 hours that the tech knew right off the bat they would cut the test short! They stopped the test about an hour early and the doctor who read the EEG came up to talk to us. Simon has myoclonic seizures which are like jerks or startles. When he starts sitting on his own and (God willing!) walking, they can become dangerous as they literally could make him fold in half or drop to the floor--even for just a quick second or two. They are also called drop attacks. The "reading" doctor told us we can treat with medication or not; it is our choice. The neurologist prescribed Topamax if we decide we want to medicate. There are side effects, as I suppose there are with other meds. I think we're going to try it. We are starting slowly and with small doses. The neurologist indicated we can back him off any time we feel the side effects (if he suffers from them) are too much. So, now we know!
Otherwise, Simon is doing just fine. He had a cold this week, but is already feeling better. He has been so strong phsyically and fighting off colds and infections. I do believe between your prayers and those of the saints, God is listening and helping! Thank you.
Ok, I just realized I forgot to talk about what happened with the second appointment! Pretty typical of me lately! Friday we saw the ENT and she determined that Simon has fluid in both ears, and while it shows no signs of infection, since its been there for more than 3 months, she recommends tubes for his ears. We hope to coordinate this procedure with several others. He needs his tear ducts probed as they are blocked. He also has a little "bubble" on his lip where his cleft surgery was done. The plastic surgeon said next type he's sedated, they could clip it and put a stitch in. Additionally, we'd like his umbilical hernia fixed and he will probably have strabismus surgery done, but these 2 most likely will be summer or later.
Ok, I think now I've covered it all!
This past week we had 2 appointments at U of M. On Thursday we saw Simon's neurologist. Next Wednesday, Simon will have a short term EEG monitoring done. It will last 6 hours and he will also be video-taped. They are watching for the amount of seizure activity he has. The number and intensity of his myoclonic seizures has increased. He will probably go on Topamax, but we will see what percent of the day these bother him. I also talked to the doctor about having an MRI done as recently on our PKS board, we've learned that abnormalities and/or tumors of the pineal gland are associated with abnormalities of the 12th chromosome and at 2 children do have cysts on their pineal gland. We all decided against the MRI for a variety of reasons, but mostly because Simon doesn't exhibit any problems with it (nausea, lethargy, etc) and also, should we find it looks strange or has a cyst there is nothing we can or would do. So, one less thing to fret about until we have a reason to!
Next week I'll report after the EEG!
Like the new look? Not much to report, that's why I haven't been updating lately. Simon is doing really well in therapy and I'm working more with him, I think we are seeing some progress too. His therapists seem impressed anyway! :) He's staying healthy which is such a relief!! I really love being home with the babies although Natalie will not let me leave her sight! Simon has a few appts at U of M this month, he's going to have see the ENT for a routine check up and also have a Short-Term EEG Monitoring done on Feb 9th. His myoclonic jerks are getting worse so we're going to talk to the Neurologist about them and medication. We're working table foods into his diet and that's going pretty well! I blend them up a little to make mushy and so far he he's doing all right. He eats so well from a spoon.
Conference plans are going well, the hotel is reserved, I can't wait.
Love to you and let's start the countdown to spring! I'm ready.
So far I've spent January recovering from December. That's almost the truth. While the kids were off school, we all slept every morning until 9:30 or 10:00. Finally, they went back to school and we started a routine. Just in time for me to throw my back out taking Simon to the doctor! Simon had a re-check on his hearing and it's no better but no worse either! He also got measured for new hearing aid molds. Therapy is back in swing now although Simon slept through all of it Monday, guess he doesn't know that school's back in session! Now we're working on getting the house in order, a new year, you know, cleaning, purging, rearranging. It feels good when something is accomplished. My last day of work was Dec 22 and I couldn't be more thrilled! It was hard the last several months and I'm so excited to be an at-home mom while I can. I'll probably be looking for work in the fall. As promised a month or so ago, here is Simon with his birthday muffin. He looks a little disappointed that it's not a cupcake, I think!
Our fundraisers are still going strong, so thank you very much to all who've bought or donated. You're in our hearts and our prayers!
To my beautiful family and friends. May the light of Baby Jesus fill you with peace, love and joy in His beautiful Christmas season! God Bless all of you always and many happinesses in 2006!
Love, Jim, Gretchen, Alex, Emily, Maddy, Natalie, and Simon Peters
I've had some questions about how people can buy candles for the fundraiser. Here are the links and you can just email your orders to me if you'd like. I'll be selling these until July 2006. If you have any questions, please let me know. Thanks for the interest and support!
HAPPY BIRTHDAY SIMON! Si turned 1 on December 3. What a year! I will repeat myself, THANK YOU to all who read this site, think of us, and say prayers for Simon. I love you all! Simon spent the weekend not feeling himself. He has a cold and just was cranky and didn't want to eat well. Sunday finally, we got some pictures of him with a blueberry muffin and a candle! If they turn out, I'll post them.
Simon's doing great, but the rest of the family is in pieces! Emily and I have the stomach flu and Jim broke his ankle last night. 4-6 weeks in a cast. Anyone have a fairy Godmother to share??
Simon had an appt last week with a retina specialist. His retina is in good shape which is great news, but his eye to brain pathway is very very delayed. That means right now, not a lot of what he sees is getting back to the brain. We have some ideas from his VI (Vision-Impaired) teacher on different things that he can work on. When I'm off, I'm going to have to be diligent in his therapies--setting up a schedule for myself.
Simon's a star! Our paper did an article on him and on PKS. http://www.battlecreekenquirer.com/apps/pbcs.dll/article?AID=/20051120/NEWS01/511200315/1002 Spread the word on PKS!
Happy Thanksgiving, I know that the Peters have plenty to be thankful for. God Bless.
I have been asked how to people may donate funds for the PKS Conference. You can use PayPal below or email me at firstname.lastname@example.org if you'd like to donate. Thank you.
I'm trying to do a couple of things to raise funds for the PKS Conference. This first is a candle sale -- Home Interiors candles and they are AWESOME! They're very nice, like Yankee Candles. If you're interested in any or know someone who is, my first order goes in November 29. http://www.homeinteriors.com/HIG/Main/index/1,2715,fundraiser,00.html?cntry=USA . Click on the Fall 2005 Fundraiser. Or click here to view the other candles available: http://www.homeinteriors.com/webapp/wcs/stores/servlet/CategoryDisplay?catalogId=10001&storeId=10001&categoryId=468&langId=-1 There is no shipping, but we do need to add 6% sales tax. Thanks!
Simon had his IFSP for Early On on Tuesday...I think it went well and although we won't know the official results until Nov 28, we do have therapy tomorrow so we might get a sneak preview!! An IFSP is an Individualized Family Service Plan and it will tell us what therapies Simon needs and qualifies for. He was well liked by the 8-9 women in the room, so he passed that test!!
Here is an adorable picture of Simon. He is still working on sitting. This picture I'm holding him a bit but he is getting there!!
Doesn't he have a great smile???? He has 3 teeth now too!
Happy Halloween! Simon was supposed to be Bamm-Bamm but I didn't do too well getting his costume around. Natalie was Pebbles, Maddy was KimPossible and Emily was a Jester. I will post a few pics of them when I get them developed. The evening was beautiful--about 60 degrees and the rain held off until about 8:00 or so. Not many trick-or-treaters though! Here are some new pictures. Enjoy and have a great day.
Look at my Michigan fans. Don't they know NOTRE DAME is NUMBER ONE????????!!!!!!!!!!!!!!!!!!
I love this little boy.......
Happy Fall, where does the time go? I know, I always say that! Simon is doing very nicely. He weighs about 18 lbs....he's remaining healthy aside from some nasal congestion he keeps having. I think this winter will be the real test for us. He has 2 teeth and now he's rolling back to stomach too. The other day he sat up for us for about 4-5 secs 3 different times. These little steps are very encouraging.
I have some news that is very exciting to me. The PKS group I'm in is having a conference out in Philadelphia next July. There are going to be numerous specialists there. More exciting to me is the chance to meet the other wonderful families I've met online or over the phone and see and meet the other children affected by PKS. We are coordinating right now the conference itself, costs involved and ways of raising funds. There are many people who will have to travel from across the country and even (hopefully) from other countries. If anyone reading this has any fundraising connections and can provide help or guidance in these efforts, please email me (email@example.com) or call me at 269-781-9221. Additionally, if you'd like to attend this conference, as a family member, support person, or specialist, please let me know and I will get you some information.
Life seems to be winding down for us for a few weeks. Alex is done with JV soccer, Emily is done with 7th grade basketball and travel soccer will be done next week. Soon basketball will start again for both of them, but in the meantime the next few weeks look good.
Blessings to all of you!
Hi all, Simon met with the opthamologist again on Monday. His eyes still look healthy and with the slightest amount of nearsightedness. She does not feel he needs glasses and additionally doesn't want him to have them because of the nystagmus he has. She feels that without the glasses the eyes should work harder to strengthen and improve the nystagmus on their own and not be dependent on the glasses. He will be seeing a retina specialist in December to rule out the possibility that the nystagmus is caused by a retina problem rather than a developmental problem. She doesn't feel it's a concern, but would like to rule it out. Additionally we discussed his exotropia. Unless his muscles strengthen on their own, Simon will have surgery on his eyes in about 8 months or so. This will help correct the strabismus (or exotropia).
That's it for Health class today! Have a good one
Ok, where did September go??? Hope everyone is doing fine. Life in the Peters' household is anything but calm. Kids running 12 different directions and always busy. The house may not survive (That's me, wondering where I am!)
Simon had a visit last week to the plastic surgeon, neurologist and audiologist. The plastic surgeon said his lip is healing very nicely and we don't need to come back for 1 year. They also said we could stop using his helmet unless we see a need--such as Simon being on his back for long stretches or see that the head looks like it's moving. :) We're very happy and I bet Si is too. Now I can nuzzle him and kiss him, not his helmet!
The neurologist said that she can tell Simon is growing stronger. She did some reflex and muscle "tests". She said we don't need to come see her unless he starts developing true seizures. Right now, he is having myoclonic jerks. These could be mini-seizures; they could lead to seizures; or they could never mean more than what they are now. They are not serious and they do not affect him at all in any way.
Ranjani (Si's audiologist) did some minor testing...she did not find fluid behind Simon's eardrums based on a tympanic test and the other test she did, he failed, which is normal for his diagnosis and shows he still needs hearing aids.
Tomorrow we visit the opthamologist, so I'll update in a day or so. I may even have some new pictures to post.
THANKS for being there.
Simon is doing just fine! Hurray!! He got a tooth today--Grandma found it at breakfast this morning!! Didn't think that would happen for awhile! Not a lot of changes lately other than the fact that he is really finessing his head control. He picks it up so often, on my shoulder and on the floor! He scootches around when he's on his belly--but he'll have rug burns on his cheeks! LOL. I think, though, it's a good pre-cursor to the movements he needs for crawling! He pulls his knees up under him.
He's still struggling with constipation--I may call the chiropractor again tomorrow...we've got to do something. He had a Cysto-Urethrogram last Tuesday, and the radiologist said his bladder is behaving perfectly. So, I would say just about every organ in his body is working normally--with the exception of his brain (possible seizures and delays) and maybe his bowels? Could just be weak muscle-tone there. He is getting stronger though.
I just added some new pictures to the WebAlbum!
Once agin, thanks for keeping him in your thoughts and prayers. Say a prayer on this day for all the soldiers fighting for America in the Middle East.
Success is mine! I finally got our new family picture loaded on the Family page. I also added a new LINKS page. I just joined the organization UNIQUE which is based in England. WOW, do they have information! I received a wonderful pamphlet on PKS and referrals to other families. They are located at www.rarechromo.org and they help families around the world affected by rare chromosome disorders. Please, please refer anyone you know who may need this organization to this site.
More good news! Simon gained over 2 1/2 lbs in 2 months. That made me so happy.
Love to all of you! Blessings to all those affected by Katrina. Hang in there!
Almost a month since I've updated! I apologize to all of you who are bored with not hearing any news....there isn't much to report! We got Simon's report from the EEG/Neurologist. His brain activitiy is abnormal but shows no sign of seizures. That's good news but doesn't guarantee anything (which we knew). Hopefully we can stay away from those, but we're trying to be vigilant in watching. In the meantime, Simon is getting chubby, has nearly perfect head control and is also lifting it so much more when he's on his tummy--on his own accord--in the past he usually need prompting. I'd like to see him start reaching for objects and we're starting to see hints of that. He eats well off a spoon 2x each day. We go back to U of M next week for a helmet check and to speak with the audiologist. Simon has fluid behind each ear, and I wonder if that's causing some un-balance in him. We'll see--the ENT didn't seem eager for tubes. He is starting back with Early On again more regularly in about 2 weeks when all his teachers come back to school. Mary (his OT) is absolutely AMAZING and she's been seeing Simon off and on through the summer.
I'm getting pretty fed up with this website as it's not allowing me to update pictures regularly. We'll see what I do about that, I may have to find another site, but I hope not!! Take care!
Yesterday was a big day at U of M. Everything went great. The cardiologist gave Simon a clean bill of health. His EKG and echocardiogram both showed a normal healthy heart. He'll go back when he's 4 years old or so to check for thickening of the heart walls. Apparently that can be a symptom of chromosome disorders. He had is EEG also, but didn't get any results from that. We don't expect anything to really show at this time...he isn't having seizures yet. It was more to get a baseline reading. Simon also went back to orthotics to have a helmet/head check. His head has improved about 50% to being where it should be. We go back at the end of August. Wouldn't it be nice if we were done at that point?!
About a week ago we started Simon on cod liver oil to increase cognition and awareness. Yesterday we also started him on a higher calorie formula: 24 vs 20 calorie. Although he looks good to us, Dr L thinks he's not growing well. Hopefully this will help him out.
Enjoy the upcoming weekend.
How can it be more than halfway through July already? Summer always goes SO fast! I'd have to say Simon isn't doing a heck of a lot himself. Must be those lazy summer days. He continues to wear the helmet and really, I'd have to say, still isn't responding any better than perhaps a 3 month old. He smiles and laughs at us and we work on head and trunk control, but there hasn't been much improvement. Well, we knew it could be a long road. I decided to start him on fish oil as a supplement. Many parents in my support group have said this can increase cognition and awareness. I don't know that we've seen an increase yet, but it hasn't been a week either. Therapy has slowed down as our therapists are school employees and work a more relaxed schedule in the summer. (shouldn't everyone??) We've been busy with family parties lately...Simon got to meet Aunt Shirley & Uncle Bill from California and also spend a weekend on the lake up north!
Since I have your ear, if you could take an extra minute to say a prayer for a friend of ours. Mitch is a 4th grader who is undergoing treatment for Hodgkins Disease. I believe God will listen. Thank you.
To everyone: Enjoy these summer days, before we know it, Labor Day will be here!
Hi everyone! We're fighting through another hot muggy day. Thanks to Simon we finally bought a room air conditioner....he is miserable in this heat...he sweats buckets, doesn't eat and is generally just cranky! We're all enjoying our living room a lot better now
Simon is doing great with his helmet, it doesn't bother him in the least and it even seems like his neck is stronger and his head is steadier. He still doesn't sit up on his own, but we keep working those stomach muscles. He had his 6 month check up last week and put on almost 2 lbs, and 3/4 inches in length. He's still very small for his age according to the charts, but he looks good to us! NONE of our babies have been big.
For any of you interested...I'm doing the newsletter for the PKS support group I belong to...here's a link to it if you'd like to read it. I've become pretty active with this group. Pallister-Killian is quite unknown to most doctors and hospitals, and we're trying to "advertise" more and get the word out about this syndrome. http://pksonline.org/newletter/news060205.htm
Once again, thank you for your thoughts and prayers. God bless........
Simon had a busy week. Tuesday Mary-OT and Ellen came to work with Simon on eating. He's eating cereal in the mornings now, and they're trying to get a feel for how his mouth works. Although he drinks his bottle on his own, he still doesn't have a good strong "normal" suck. For instance, he can't keep the pacifier in his mouth, it just kind of pushes out. Simon is making a number of improvements though, especially in his responses to people. He smiles constantly, his vision is getting more controlled and he is turning to sound and visual stimulation. Although with help, he'll push up on his arms on his tummy, he doesn't do it on his own, unless he's ticked off! So he is getting stronger, but isn't motivated to raise his head without help.
Thursday we were back in Ann Arbor for new hearing aid moulds. They did a quickie test to see if he heard better with his hearing aids then without so that they can justify to insurance that they should pay for them! He passed that one! Then we also took Simon to the craniofacial dept to see about his lopsided head. They agreed that the right rear of his head is flattened and was pushing the front forehead out on the right side as well as pushing that ear up and forward. They gave us the option of trying to improve it through positioning or through a helmet. We chose the helmet option. With Simon's strong tendency to turn his head to the right, we were afraid positioning wouldn't work well enough. We'll go get a mold taken of his head in the next few weeks. The nurse-practitioner said that typically the helmet is worn 3-4 months.
Friday we were back in Ann Arbor to see a neurologist. With PKS, seizures are very common. We want Simon to have a baseline EEG to rule out seizure activity right now, get an idea of his brain patterns and we 'll have something to build on in the future. The neurologist agreed that this was a good idea, so he'll have the EEG on July 20. He weighed 13 lbs 7 oz and was 24 1/2 inches long at that visit!
We are really going have to do a lot of physical therapy work over the next few months.
Hi everyone! Not much is new here in the Peters' household! It seems to be warming up outside, hopefully for good! School is winding down for the "big kids"--they'll be done on June 3---I think we should ALL get the summer off! Alex will be taking driver's ed this summer and working at a local ice cream shop. Emily and Alex will both be doing basketball camps too. Maddy heads back to daycare and she can not wait! Natalie and Simon will continue at our daycare. Natalie is 18 months tomorrow!! What a GREAT age! Simon just turned 5 months. That doesn't seem possible. Here's what he's up to: Trying to roll when on tummy, often he does better when he does in unconsciously (like in his sleep). He is getting much better at raising his head while on his tummy. We're starting to seem him turn to the side more when he lies on his back. So we're encouraging that by working on rolling exercises. He can keep his neck fairly steady when he is in a sitting position but still drops it back sometimes--his PT (physical therapist) called this "stacking". He doesn't seem anywhere near close to wanting to hold himself in a sitting position yet. He's using his legs on his tummy---like he's trying to scootch. Mary did say that his legs responded good when we tried to stand him on them. She seemed very pleased at his last appointment. We will meet with his OT (occupational therapist--also named Mary) and his Spec Ed coordinator (Ellen) on Monday for a short time. He has appts just once a week. I don't know if we can do more than that before I quit work. MAYBE 2 times a week, we'll just have to see what he needs over the next few months. Off and on he'll also have a hearing and vision specialist visit him. Monday he's also going to the doctor for a quick weight check. He's eating so well!! This past Monday he started with rice cereal which he eats in the morning at daycare and he's up to 6 oz bottles. This week he has been chowing down!
We see lots of smiles out of him, most of them in definite reaction to us....once in awhile we find him smiling at nothing! I still think that Simon has far exceeded any hopes I had for him. When I compare him to other 5 month old babies, he appears slower and behind, but on his own, I marvel at what he's accomplished so far. He's stayed strong and healthy through at least 3 colds and with what I know of other PKS children, this is a big thing!
A wonderful spring weekend to all of you. Hope you all have sunshine! Oh yes, here are 2 new pictures! So far, that's all I've managed to get on here!!
Just wanted to say a quick thank you to all of you who check out this site and jot notes on the guestbook. It's nice to hear from all of you and it's great to hear from some of you I don't get to see often! Thanks for keeping Simon and all of us in your prayers. He's doing so well. His body x-ray came back normal. He's going to have one more kidney test, but they aren't concerned that there is a problem. Did I tell you he may have to wear a helmet? He favors his right side and his head is mis-shaping. We'll find out more on May 19th.
GOD BLESS YOU!
Hi everyone--First off I want to say that I've been trying for several days to get more pictures on the site, but something in the program isn't letting me continue. I'm trying to get some help, so hold tight and I hope to have more on here shortly!
Today we went to Ann Arbor to see a geneticist. Very interesting and mostly for the fact that Simon got a very thorough exam by a doctor and a resident. It was so nice to get firsthand info from someone who's has some experience with chromosome disorders. I learned some interesting things-such as patchy hair growth isn't necessarily a PKS thing as much as a mosaicism thing. He also said there is no way to really tell how Simon will be because of the mosaicism, although he did say that even though he had the physical characteristics of a chromsome disorder, he seemed to appear like a fairly typical 4 month old. That was more good news! Simon has a very small sacral dimple which is shallow and is of no concern. More hurrays! His fingers are perhaps borderline on the short side (we asked simply because we thought they looked a little stubby) and of course he has the wide flat nasal bridge. He didn't comment on muscle tone, but I think that's because Simon doesn't seem too affected by it.
He referred him today for a renal ultrasound--and the tech said his kidneys look fine. He also is doing a blood test for genetics testing even though he doesn't think the disorder will show in the blood cells. Simon also had an x-ray survey done---his whole body was x-rayed. If anything looks odd we'll be referred to a peds orthopedist. The doc also referred him to a cardiologist---just to rule out any problems or concerns. No one has heard a heart murmur since the night he was born, but better safe than sorry. Simon will have an echocardiogram. Finally, some not as good news. Simon really prefers to turn toward the right when he's laying down or in his seat and he's flattened the back side of his head. We saw signs that his ear was more forward on that side and the doctors noticed that too. We're going back to Dr Kasten in the craniofacial dept (he did Simon's cleft repair) to find out if he wants to put Simon in a helmet to help shape the head. We'll call tomorrow for that appt. Not horribly serious, but something else to address.
I think that's it! The resident thought I was in the medical profession after I started telling her about Simon's prenatal diagnosis and delivery. Amazing how well versed in the lingo I've become! LOL.
Wow, it's April already and Simon is 4 months old! He had his 4 month check up today and overall things went well. He got 5 shots, though.
The doctor was still positive about the way Simon acts and looks. He thinks his muscle tone is about 85% normal--he thought maybe the abdomen and leg muscles were a little lax but not too bad at all. We mentioned that his ears are not lined up and that we see him turn to the right a lot and also that he raises, and keeps straight out, his right arm. Overall he thought these were not signs of something larger, that they are probably just symptoms of his mental development, if that makes sense! He didn't gain that much weight, only a little over 1 1/2 lbs, so we're going to go back at 5 months for a weight/height visit. Also, we have the go ahead to start on cereal! We'll see how that goes.
On April 18 we see the genetics team at U of M and I'd like to get a referral to a developmental pediatrician they have there. I think that it's probable that this type of doctor will have a lot more insight into the delays we'll face with Simon, even if we would just see him once a year. Anyway, I'll write more about that when the time comes!
We got back from Florida on Saturday the 9th. THANK YOU BARB for keeping Simon for us. Simon and his grandma really got to bond for more than a week. Simon came back very spoiled as he was held and cuddled for all but about 15 minutes of that time! LOL!! We all had a marvelous time and the weather was beautiful. It was lots of fun introducing Natalie to the beach and the ocean. She loved it.
Simon seems to be responding to our voices much better and also to be using his arms and hands more purposefully and less randomly. Since he is still having trouble focusing on things, we're trying to catch his interest using sound and touch. He has also improved in that he's using both hands more evenly now. We also have to work on head control and getting those neck and shoulder muscles stronger!
Hope all of you are enjoying the start of spring--it's been quite wonderful here!
Hi everyone! It feels like spring here in Michigan today!! Makes me want to get out and dig in the flower beds
Simon is eating better and maybe, just maybe, trying hard to focus on things a little more. At therapy Monday he grabbed the koosh ball and also the crinkly bow. He also kept smiling when we talked to him. Suzanne the hearing specialist visited also to check his hearing aids and see how we were doing. When we get back from Florida the vision specialist and Physical Therapist (PT) is coming. Those will both be great visits to see where Simon is and needs to be!
I'll try hard to post some new pictures (didn't I say that already??).
God Bless all of you and thanks for continuing to think of us!
Today is Good Friday. Simon has had an off sort of week. He hasn't been eating real well, he just doesn't seem hungry. Finally today, he was taking 4 oz again at each feeding, but most of the week, we've been lucky to get 2-3 in! We've been working at trying to get Simon to focus on objects. We hope to meet with the eye therapist when we return from spring break. His OT told us this week, she believes it'll be a hard road to get Simon going. He really doesn't seem to look at anything or focus well. He doesn't reach for objects yet. He continues to be strong and healthy!!! The plastic surgeon told us we should start massaging his scar to help with the scar tissue. Poor Simon HATES this!! :-) We have done it several times and already the area looks redder and more bruised as we must be bringing blood to that spot. We'll have to keep plugging away at it!
I'm going to try and post more pictures tomorrow. God Bless all of you and have a wonderful Easter!
We saw Dr Kasten (the plastic surgeon) today for a follow-up visit. He was pleased with the healing of the lip and indicated we had no choice but to let the hole under his nose heal on its own. If there is a big concern with scar tissue, it can be fixed several months to a year down the road at the earliest. When the hole is fully healed we will massage the area to keep diminish the scar tissue. Here is a picture of Simon's lip (please ignore the green ick under his nose!) We also got Simon's new molds for his hearing aids. They seem to give more feedback then the old set did, so we'll play with them a bit and see if we can improve on that. We're now using toupee tape to hold the aids behind his ears and to his head. Seems to be doing the trick!
Isn't this lip amazing?!?!?!?!?
Surgery was scheduled Friday for 11:00 am, but Simon didn't end up going down until 1:15 pm. The surgery ended up taking 3 full hours and then Simon spent about 1 hour in recovery before we went back to see him. By then he was awake and acting hungry (he hadn't eaten since 4:30 am that morning), but really wasn't able to eat due to the numbness and the swelling of his upper lip. But he looked good! You could see his cute little nose, even though his lip is covered with steri-strips. He moved upstairs around 6:00 and just was really sleepy. Jim and I left to get dinner around 7:30 and got back at 9:00 and he was still zonked out--but his IV had moved from his hand to his head! Yuck! It had gotten clogged and they couldn't get it restarted in his hands. We left for the hotel about 9:30 or so and Simon slept until 6:00 am when he took about 1 1/2 ounces. He wasn't really interested though, probably because of the tylenol codeine and effects of the anesthesia. The doctor came in around 10:00 and said Simon looked good to go! We were feeding him at that time, and because he was showing interest in the bottle and wanting to eat, he said he didn't need to stay longer. We got home from Ann Arbor about 4:15 pm on Saturday.
I'm amazed that Simon isn't more bruised and swollen! Now it's Sunday afternoon and he just ate almost 3 oz and finally started to move his lips around the bottle. The upper lip is still swollen and it looks like he may be around the eyes too, but overall it's very minor. We will go back Wed or Thurs to get the stitches removed. I hope by then he'll be eating like normal! The doctor did say it may take a full week or two for the swelling to be gone and probably one month before the lip line reflects its permanent shape.
Check out these pics!
FYI--we have to be at the hospital at 10:00 am on Friday. I think the surgery is at 11:00. Keep him in your prayers!
Here is a picture of Simon and his "extra ears". We need to find a way to keep them down behind his ears. The audiologist recommended the pink beauty tape women use to tape their hair down.
We had a very busy day at U of M today. First we saw an ENT who checked Simon's ears for a medical reason for his hearing loss. It does appear that the initial diagnosis was correct. Simon didn't have fluid in his ears and most likely has a sensorineuronal hearing loss, meaning the inner ear and perhaps nerves are affected. So we headed downstairs where he was able to get his loaner hearing aids! Wow, what a struggle these will be for awhile until we're used to them.. His ears are so tiny and anytime we hold him and they brush up against us (feeding, snuggling, etc) they whistle and wiggle! We'll get used to it I guess, and the tone doesn't seem to bother him. The audiologist said he is so young, we may not see great improvements in what we notice him hearing, but he is hearing it all! I think I will have the Early On hearing specialist come and visit once or twice (for now) as a consultant and to answer our questions. We got training on how to put them in and we'll have to train his caregivers also. Next week after his surgery they will fit him for the next set of molds--he'll probably get new ones every few weeks while he's growing so quickly. We've decided right now he looks like Stitch from Lilo & Stitch, they stick up and out over his ears. I'll put a picture on here in the next day or so.
Next Friday is surgery! Hurray, I'm so excited to see how Simon's going to look! We still don't know what time surgery is, we'll find that out on Thursday. So far his cold has stayed contained to his nose, so I think there won't be any problem with surgery staying on schedule, but we won't know that for sure until Thursday or Friday. It will be very disappointing if they have to postpone.
Other than that, Simon is doing great. He's strong..holding his head up and steady when we hold him and still lifting it while on his tummy. We're starting to see a few smiles out of him, and hopefully now that he'll hear us better, we'll see more interaction from him. We're very blessed that he's doing so very well. Please continue to keep him in your prayers and know that all of you are also in mine.
Simon had his 2 month check up and shots on Wednesday. He did so well! He added more than 1 lb and now weighs 10 lbs 10 1/4 oz. I have to double check how long he was. The doctor was very impressed with both his growth, body movement and his behavior. We'll see more on the cognitive side as he grows old, but all is well right now. Praise God! Our and your prayers are working!!
Hi--Not very much to report right now. We saw a local ENT today about Simon being tongue-tied. He told us the best thing to do would be to have it taken care of during the cleft surgery. We thought it would be a simple office procedure, but he indicated he usually did it around 6 months of age in an operating room! Well, we'd prefer not racking up another OR charge, so we'll take care of it with the other surgery! Also, he indicated that Simon's eye discharge is due to the nasal contortion and also should be able to be corrected during the cleft surgery.
Simon is totally off his phenobarb now and we've seen no sign of seizure activity. He is eating 4 1/2-5 oz at each feeding, so I hope we see a nice big weight gain when we go to the doctor in Feb. Emily and a friend told me they've caught Simon smiling, but I haven't seen that yet. Hopefully we'll see that type of interaction very soon! Other than that, he's doing great!