Meet the McNeil Family

Meet the McNeil Family

Saturday, May 30, 2009

ER

We had our first ER visit for Oliver last night.  The past few nights Oliver has been screaming and holding his head whenever we lay him down for bed.  He has been totally inconsolable - nothing seems to take the pain away or comfort him in any way.  I tried to lay him down for his nap yesterday and he screamed once again for over an hour.  So I left messages with our specialists and pediatrician, but I wasn't hopeful that I would hear back from anyone since it was Friday afternoon.  Thankfully his doctor called back and I took him to see the pediatrician.  She is the best and fit us in at the end of the day.  She checked his ears, sinuses, etc and couldn't find the source of the pain.  In the meantime, our metabolic doctor called and asked that I bring Oliver into the ER at Children's for a CT scan.  There was a fear that he could be experiencing intracranial pressure, sometimes seen in kids with MPS.  We came home, had a quick dinner, packed a small bag and off we went.  The ER was filled and I thought we were going to be there for hours before we were even seen by a doctor.  Thankfully our geneticist called ahead and as soon as I mentioned Oliver has a metabolic disorder they immediately took us back to a room.  (Matt joked that we have a platinum card at Children's.)  The doctors were perplexed and agreed that he needed to have a CT scan.  There was no way Oliver was going to lay still for the scan.  But they would not sedate him without an anesthesiologist present, due to the complications kids with MPS have with sedation and she was busy with an emergency for the next 6 hours.  Fortunately I was able to get Oliver to fall asleep for about 10 minutes, just enough time for the CT scan to be completed.  Our geneticist requested that the chief of neuroradiology review it.  Everything looks normal, except for the enlarged ventricles common in Sanfilippo.  So, we were sent home without an answer to his pain, but confident that there wasn't any swelling/pressure in the brain.

He had another rough night sleep last night, but did eventually fall asleep around 3 for a few hours.  And he is currently napping without any screaming.  We are hoping that whatever the cause it is gone and he will be pain free....and we can all sleep once again.

We will be back at Children's Tuesday for his T&A surgery.  My parents are coming down tomorrow night to stay with Waverly while Matt is at work and I am at the hospital.  It is such a simple surgery, but I still get very nervous about the sedation.  Since this surgery requires intubation and Sanfilippo kids tend to have fatty pockets in their throat, our ENT is going to be very cautious.  We have already spoken to the anesthesiologist and they are also aware of the additional risks.  I am confident we are in good hands.

On a lighter note, we went to a wonderful kids shoe store called "Shoe Train" in Potomac MD today.  Waverly needed a pair of sandals to wear with her orthotics and our physical therapist recommended this store.  They were AMAZING!!  They work with all kids, but they have a special desire to help kids with special needs.  They stock all types of shoes to fit orthotics and they spent time with us to find the perfect fit for Wavey.  I highly recommend them to all of my DC friends.  It is well worth the drive.  You will definitely be pleased with their selection and service.

Thursday, May 28, 2009

Green

Waverly seems to be on the mend.  Her appetite is still not back entirely, but it does seem to be slowly returning.  Oliver is now sick with the same thing.  He started antibiotics last night.  Hopefully they will begin working soon - he was up most of the night.  His T&A surgery is scheduled for next Tuesday, so we are awaiting confirmation that it will go on as planned.  I do not want to have to wait yet another month.

This has been a difficult few days for me.  (I don't think the sick, grumpy, sleep deprived kids has helped.)  The changes in Waverly seem to come in waves and I feel like we have been hit by a big one.  She has lost so much speech within the past few weeks.  Even her singing has been affected.  She doesn't complete the lyrics anymore, just an occasional word.  And her clarity has gotten a lot worse.  The only word I hear her say anymore is "mommy" and I am terrified for it to disappear.

I try very hard not to compare my experiences with those around me.  I fight the jealousy impulse constantly.  This week I have been overcome with envy.  I wish with all of my heart that Waverly & Oliver were healthy.  I have dual emotions at all time - thankfulness for my beautiful children and the incredible ways they impact the world, but also intense sorrow that they are slowly slipping from my arms.

Family Fun Yard Sale Event

A dear friend is organizing a fundraising event on Saturday June 13th from 8:00 am - 2:00 pm at Faith Church 6528 Hamilton Blvd Trexlertown PA.  There will be a yard sale, auction, food, bake sale, face painting and games.  It should be a wonderful event.  If you are in the area, please consider stopping by.

Monday, May 25, 2009

Long Drives

We had a great time in New York with my sister and her family.  We had a grueling 9 hour drive, but we were so excited to arrive.  We hadn't been to Syracuse for 3 years, when we told my family that we were pregnant with Oliver.  We spent most of Saturday snuggling with a very sick Waverly and eventually took her to an urgent care in the afternoon.  She had an incredibly high fever and the beginning of an ear infection.  Fortunately the doctor treated her with antibiotics.  By Sunday afternoon she was feeling so much better.  We went on walks, grilled out, played with the kids in the backyard, visited an adorable little lakeside town and went out for breakfast at a local diner this morning.  It was a great trip!  The drive home today was much easier, only 7 hours.

We are a little concerned about Waverly.  She has had a decreased appetite the past 4 days.  We aren't sure if it is caused by her ear infection or something else entirely.  She typically LOVES to eat, but she has been pushing food away.  Since she is unable to tell us if something hurts, it makes diagnosing her symptom much more difficult.  We are hoping this is just response to not feeling well and not a new phase in her disease.  This disease takes away so much from our children and I will be so sad if her enjoyment of food disappears.

Oliver hogging the soccer balls


Waverly walking by the lake

Oliver waiting ever so patiently on the kids' table

Thursday, May 21, 2009

School Boy

We will soon have 2 little ones in school.  I had Oliver's IEP meeting yesterday.  It was actually quite emotional for me.  My baby boy is growing up and this meeting was a very clear reminder.  Thankfully it was another great meeting.  I am so grateful to our school district.  Oliver has been assigned to the school that was my first choice.  He will attend a daily morning preschool program for children with hearing impairments and some children have additional issues as well.  I visited the school and observed the classroom.  It is going to be a wonderful fit for him!!  Oli doesn't have the opportunity to socialize with other children very often.  This is going to provide him with a little peer group and hopefully some friends.

This next year is going to be an amazing time for him.  He is still learning and able to effectively communicate with others.  I want him to have an incredibly enjoyable preschool experience.  I am so excited for him.

Tuesday, May 19, 2009

Loss

Another child with Sanfilippo Syndrome has gained his angel wings.  Andrew passed away early this morning.  Thanks to those of you who said a prayer for this lovely family.  The past few months have been tragic for the MPS community.  So many sweet children have lost their lives to this horrible disease.  No matter how hard we try, it is impossible for Matt and I to not think about Waverly & Oliver's future.  In fact, Waverly recently celebrated her 5 1/2 birthday and we cried over how quickly time is passing.

I am anxiously awaiting a call back from the hospital to schedule Waverly's MRI and EEG.  She had another "episode" last night".  She had a very vacant stare, stopped interacting for about 30 seconds and she was drooling (very rare).  Matt and I were both with her and it terrifies us to watch her go through these episodes.  She is also continuing to lose her verbal skills.  Just recently we realized that she hasn't said "Daddy" in weeks.  Her teacher wrote today to say that they have noticed she isn't singing her songs like she used to.  She used to sing lines from her favorite songs, with some prompting.  Now it is an occasional word and her clarity is decreasing.

Waverly has been a mommy's girl the past few days.  She is constantly climbing all over me and giving me kisses.  She gets right in my face and says "Mommy".  It is the MOST beautiful sound in the world, yet I fear I won't hear it too much longer.  This is such a cruel disease.

Monday, May 18, 2009

Sadness

We are happy to report that MPS Awareness Day was a success.  We gave away about 400 ribbons and 300 lollipops.  We concentrated mostly on Waverly's school and Matt's office.  I hope to post some photos soon of Matt and his coworkers and Waverly's teachers.  Next year I hope will be able to do more to raise awareness.  It ended up being an emotional day for me.  I wish that I didn't have to know about MPS.  But I hope that through our small efforts, we can work towards finding a cure.  I just want to give future parents a sense of hope when a child is diagnosed with Sanfilippo, rather than a sense of helplessness.

We had a wonderful weekend.  We spent some time exploring Virginia and visiting a few local festivals.  The kids love the people, music and of course fair food.  Last night I had dinner with 2 very dear friends.  They both have a child with special needs and so there is such a sense of connection among us.  I love my time with them.

Today has been a difficult day.  There is a sweet little boy named Andrew who has Sanfilippo.  He is 11 and his body is just not able to fight anymore.  They believe it will only be a short time until he passes.  His mom has been a source of encouragement and information for me.  I see Oliver in Andrew.  Every time I hear about a child dying, I can't help but personalize it.  Say a prayer for Andrew and his lovely family today.

Friday, May 15, 2009

Precious in Purple






Here are some photos we took of  Waverly & Oliver tonight in their purple attire.

MPS Awareness Day

Today is International MPS Awareness Day.  It is not a celebration, but a day to honor the children who have so courageously lived with this disease.  It is also our chance to have a unified voice to bring about the attention this group of diseases so desperately needs.  There is no cure.  And there is no treatment option for MPS III/Sanfilippo Syndrome.  That has to change!!

Please wear purple or a purple ribbon.  Tell people about Waverly & Oliver and direct them to the MPS Society's website.  If you know of any medical professionals, therapists, teachers...tell them about this disease.  So many children are diagnosed well after symptoms begin to manifest, because people are not familiar with MPS.

I would love to see a day when MPS can be diagnosed early and a treatment can begin immediately.  I never want another parent to be told their child has MPS III, he/she is going to die much too young and there is nothing we can do about it.

Let's all work together to find a cure!!

Please send me photos of you and your family wearing purple/ribbons.  I would like to post them on the blog to show the international support for all children with MPS.

Thursday, May 14, 2009

Toga! Toga! Toga!

Tomorrow is MPS Awareness Day.  Please wear purple, wear a purple ribbon (the color of courage) and spread the word about MPS.  There is currently no treatment or cure for Sanfilippo.  We need to raise awareness, so we can encourage more research funds to find a cure.

For some reason Oliver LOVES getting all wrapped up in his towel after a bubble bath.  He then wants to wander around the apartment.  He always looks like he is off to a toga party.

We got Waverly's hair cut last night...always an ordeal.  She actually did great!  We went to one of those kid places at the mall and they put Dora on for her.  We had to strap her to her seat, I held both of her hands and gave her a lollypop.  She stayed still for about 7 minutes - just enough time for a cute bob cut and bang trim.  I wish we could lose the bangs all together, but the grow out stage is just too difficult.

Wednesday, May 13, 2009

Success

Matt and I had a meeting today to finalize Waverly's IEP for kindergarten.  We had to decide on placement and services - really the 2 most difficult areas of the IEP.  Everyone was on board with our preference of having Waverly attend a local elementary school that has a moderate-severe special needs self-contained classroom.  She will attend all day, although a half-day option is there if a full day is too much for her.  We have worked out that she will receive OT, PT, Speech, HI, assistive communication and audiology services (whew!).  I was also thrilled to hear that they are going to hire a 1:1 assistant for her next year as well.  (I thought this was going to be the most difficult item, but everyone agreed that she needs that assistance for her safety.)  She is also going to attend the summer program they have for 6 weeks in July & August, with a 1:1.

It was such a wonderful meeting.  Everyone in the room understood the unique nature of Waverly's disease.  I could sense their compassion and love for her.  The principal of the school where she will attend was amazing!!  Matt and I were both instantly impressed.  She has observed Wavey in her preschool setting and truly wants to create the best environment.

I have heard horror stories from other Sanfilippo parents regarding IEPs and placement.  We chose this area of Virginia specifically for their special education program.  We are so thankful that we did!  I have always said it is the little things.  This meeting was no exception.  There was no fighting, no battle for understanding, no additional stress.  I am confident that Wavey is going to be in a wonderful kindergarten classroom, with people around who will support her, keep her safe, make her smile and allow her the opportunity to enjoy life. 

Of course I handed them all an MPS Awareness ribbon at the end.

Tuesday, May 12, 2009

Coordinate

Waverly had her appointment with the neurologist yesterday afternoon.  I wanted to take her in to see him after she had her seizure in March.  He is going to order an MRI and EEG, both sedated.  I am not sure why it is so difficult to coordinate 2 tests to be done at the same time, but it is proving to be quite a feat for the folks at Children's.  Waverly has had a lot of issues with anesthesia in the past, so we want to limit her sedation time.  I am hoping this can be arranged quickly.  We are anxious to see if there has been any additional seizure activity.

The kids are both FINALLY healthy.  We are getting back into our regular schedule and it is wonderful.  This should be a fairly easy week for us.  We do have Waverly's IEP meeting tomorrow.  We will be deciding placement and services - the most difficult part of the process.  I am hopeful that it will be a easy meeting.

Sunday, May 10, 2009

Happy Mother's Day

Happy Mother's Day to all of you amazing moms out there.  I hope you are enjoying your special day.  I went out for breakfast with my family, after sleeping in.  This afternoon I finished up preparations for MPS Awareness Day, this Friday May 15th.  I have 240 lollipops ready to pass out and 200 cards with purple ribbons.  I am hoping to raise attention for MPS within our community.

Saturday, May 9, 2009

Day Off

My parents are here for a visit this weekend.  Matt and I were in desperate need of a break and they provided us with one today.  We both slept in and had a night off from taking care of a sick Oliver.  We took off this morning and went to visit some of the European embassies.  We visited the UK, Germany, Spain and Sweden.  We ate some wonderful food and enjoyed a beautiful day of walking in the sunshine.  I loved the stop at Starbucks.  We came home for a few hours this afternoon and then headed back out for dinner.  What a wonderful day off!

My nieces sold lemonade today at their yard sale.  All of the proceeds went to "A Hundred for a Home" and they were able to raise over $41.00!!  They had beautiful signage and passed out cards with each glass of lemonade.  They wanted to raise awareness for MPS and support for their cousins.  My nephew helped with all of the cards and signs.  Here is a photo of the girls and their lemonade.  I am so proud of all of them!!

Friday, May 8, 2009

My Babies



Waverly and Oliver were snuggling together on the couch again today while watching Mickey Mouse Clubhouse.  I was able to get these great shots.  They are such beautiful babies.

Thursday, May 7, 2009

Smile On My Face

This morning I took the kids in to the pediatrician for a blood draw.  I could not have gotten through the appointment without the help of our respite care worker, Preeti.  She has been working with us for about a month and she is such a blessing!!  She spends 3 days a week with us.  I am able to take Wavey to therapy and leave Oliver at home with her.  She helps me bathe the kids, get them dressed, plays with them, accompanies us to doctor appointments, whatever we need.  I have been able to run errands in the afternoon while Waverly is at school, because she stays home with Oliver.  It has changed my life.  Honestly.  I could never take the 2 kids to the doctor by myself before.  Matt would have to take time off of work or it would be a chaotic visit, ending in tears of frustration.

Because of the doctor appointment, Waverly was late to school.  Preeti stayed in the car with Oliver, while I took Wavey into her classroom.  I was able to meet Mrs. S, her 1:1 aide.  She is so sweet and I immediately liked her.  Waverly was so excited to be in class.  She went right over to her special yellow cube chair.  Mrs. S put in her hearing aids, glasses, weighted vest and weighted lap blanket.  The teacher put on her FM system and they started circle time.  Wavey's classmates were curious about her new shoes with orthotics and asked me some questions.  I left the classroom with a huge smile.  While her experience is not a typical preschool experience, she is so happy and obviously loved.  I am so thankful that we are in an area with such superb special education services.  It has been a long road, but I finally feel like Waverly, with her unique circumstance of having a regressive disease, is understood.

Wednesday, May 6, 2009

Exhaustion

I am so glad Oliver's surgery was rescheduled.  We were up most of the night with him - he is one very sick little boy.  He doesn't want to eat and if you know Oliver, that is a true sign of illness.  Thankfully our schedule was very bare this week, so we are able to stay in and rest.  I am hoping he is finally on the mend.  Between the 2 kids, they have been sick for the past 2 weeks.  I am desperate to get out of the house and back into our routine.  Thankfully the weather has been incredibly rainy, so we aren't missing too many beautiful sunny spring days.

Wavey is well and back to school.  We are still receiving good reports from her teacher.  The 1:1 assistant is making a HUGE impact on Waverly's experience at preschool and for the others in the class.  Wavey's teacher is coming over on Friday morning for a visit and I am looking forward to getting more details.  The school nurse will also come for the visit.  She wants us to have a Care Plan in place for Waverly, especially since she has had her first seizure.  There have been a few times this week, according to her teacher, that Waverly has been staring off into space.  This can sometimes be a type of seizure.  We are going to the neurologist on Monday to discuss our options and do some tests to see if there has been additional seizure activity.

I am exhausted today...and not just from staying up all night.  I am just mentally and emotionally wiped out.  It has been such a long 12 months.

Monday, May 4, 2009

MPS Awareness Day is May 15th

MPS International Awareness Day is May 15th.  I encourage all of you to spread the word about MPS.  You can visit the MPS Society website to become a member, make a donation or to get ideas on how to raise awareness for this terrible family of diseases.  I am excited because Waverly's school is asking all of the teachers to wear purple ribbons that day.  Wavey's teacher and I are going to make them along with a card describing Waverly's syndrome.  I am also handing out grape lollypops to all of the preschool students with a sticker that has the MPS Society's website on it.  Maybe you can do something as simple as wearing purple (the MPS color), in support of all of the families.  Let's find a treatment and a cure!!!

Thanks to all of you for visiting my blog.  Thank you for your comments, your thoughts and prayers and your support.  I do not know how I would have survived this past year without all of you.

Countdown Continues

Poor Oliver is going to have to wait another month to have his tonsils and adenoids removed.  He is still ill and getting worse, so we thought it best to put the surgery off.  Unfortunately, the next available slot isn't until June.  Hopefully he will be healthy by then.

In other Oliver news, he said "oh" last night, as in "oh no".  He signs this by putting both hands on his head whenever something falls or breaks.  But for the first time he said "oh".  We have never heard him make this sound before, so we were thrilled.  He loves to throw a ball, but be careful because he will stand right in front of you when he does it.  And he is learning to catch.  We have also started working with his grasp on a crayon and he is beginning to scribble.  I am so proud of my little guy.

We often think that we were lucky to find out about Oliver's diagnosis so early.  It was such a struggle with Waverly.  We didn't know if we were paranoid first time parents or if there was something actually wrong.  We would get so frustrated with her inability to do the things her playmates were doing.  But with Oliver, we have been able to adjust our expectations.  We can celebrate his little accomplishments, without constantly focusing on all of the ways he is different from his peers.

Saturday, May 2, 2009

Sister & Brother


We stayed in for most of today, except for a long walk this afternoon.  The kids are still a bit under the weather.  Oliver's surgery is scheduled for Tuesday, so we need him healthy.  The kids rarely sit next to one another for an extended period of time.  Wavey has no spacial awareness and often puts her full weight on Oliver's chest, knee or head.  Needless to say, we have to keep a very close eye on her.  I put on a Mickey Mouse Clubhouse (their FAVORITE show) this evening while I was making dinner.  When I looked over, I saw them snuggling together and I had to get the shot.

Waverly's 1:1 assistant has been in the classroom for the past 2 days.  Wavey's teacher emailed me last night to tell me what a great day Waverly had.  (This is such a nice change of pace to the usual messages.)  She is responding beautifully to the teacher when they are using the FM system....great eye contact, looking when her name is called, laughing during singing time.  I am proud of her and I only wish she would have had this help when she first started school in the fall.

Friday, May 1, 2009

School Photo

When Waverly got home from school yesterday, she had an envelope containing her spring school photos.  (I didn't even know they took both fall and spring photos.)  When I first saw her picture I wanted to cry, but within a few seconds I had a huge smile on my face, with tears in my eyes.  This photo so totally captures my sweet little girl.  I LOVE it and (of course) bought every copy they sent home.

We were supposed to go to South Carolina for the weekend.  My friend Leslie is having a 5k run/walk in honor of her daughter Izzy.  Izzy has Sanfilippo Syndrome and they started a fundraiser to assist other MPS families.  Wavey has had a cold all week and last night Oliver started with a fever.  We are so disappointed that we aren't able to attend and be with other MPS families.