I am a very happy Mommy!  Meghan had her first growth check up this week with her Endocrinologist since she started growth hormone therapy.  When she started GH 2.5 months ago, she weighed 20.8 pounds.  Today, she weighed 22 pounds.  To put this into perspective, Meghan has been at 20 pounds since her last surgery in February 2013!  In 2.5 months, she gained 1.5 pounds!!!  She also gained 1 centimeter in height!  I didn't think we were ever going to get her past the 20 pound mark.  The doctor would like to see a little more growth next time we see her in 4 months.  According to the growth charts, she is still -3.79% below the 0 percentile for her age.  The only concern from the appointment is that Meghan has been complaining for a few months about leg and knee pain.  She complains about pain in her right leg, which is her larger leg.  She is going to check with Meghan's Orthopedic doctor to see if she wants to see Meghan sooner than October, which is our next scheduled Ortho appointment.

Meghan also had an abdominal ultra sound.  She did super!  She even helped the ultra sound tech while she was having her scan.  She has a little more fluid in her right kidney than previous scans, and Urology was consulted, but it's not concerning enough for them to see Meghan!

I have spent the last few weeks talking to Meghan's teacher, OT and neuro about Meghan's last MRI in November.  When I got the MRI report in December, one of the findings listed on the report is that Meghan has a slipped disk in the C2/C3 area.  She also has early disk degeneration disease in that same area.  After reading the report, I talked to Meghan's OT about the findings (she is super knowledgeable and has many times helped me understand things more than doctors).  Her concern was if there should be any activity limitations and if Meghan needed some kind of stabilization and advised me to talk to her neuro.  I talked to Meg's neuro who has decided to limit some of her activity.  He doesn't want her doing any tumbling of any kind, no summer saults, jumping on big trampolines or bouncy houses, or doing any activity that would put pressure on her neck area.  No stabilization is needed at this point, but it is something that will be monitored over time.  Luckily, Meghan is very mellow and not much of a risk-taker, so we don't have too much limiting to do.  The neuro is also recommending that we have a neurophsych assessment done on Meghan.  Jeff and I have known about this for a couple months and we have decided that at this time, we do not feel this is something we need to put Meghan through.  I think a year down the road when Kindergarten gets closer, we may decide to have this done, but not right now.  Meghan's teacher and OT agree with us that it will be beneficial as Kindergarten approaches, but no need to do the assessment right now.  A neurophsych assessment is broken up into three 2 hour testing sessions.  An assessment includes tests of the child’s intelligence, academic skills, attention and concentration, learning and memory, processing speed, visual spatial perception, language skills, visual motor and fine motor skills, sensory perception, executive functioning (such as planning, organization, initiating and inhibiting behaviors) and emotional functioning.  A pediatric neuropsychologist interprets the pattern of results in the context of the child’s developmental stage, their current setting and the child’s medical history.  An intervention plan is developed to support the development of skills and/or how to use the child’s strengths.  Why would an assessment be beneficial for Meghan?  It would give us a description of her strengths and weaknesses, give suggestions on what we can do to help her, give us recommendations for educational programming, and help us know what is fair to expect from Meghan at this point in time and suggest further therapy if needed.

 

Some good news is that the biopsy from November is normal!  We will meet with the Geneticist in 4 months.

We will have a team IEP meeting end of Feb/early March to discuss schooling next year.  I am hoping we can transition Meghan into the preschool class that has typical kids and special needs kids combined so we can ready her more for Kindergarten.


Meghan helping the tech while having an ultra sound

FINALLY!!  This sweetie has officially gotten past 20 pounds!!!

 

Happy New Year!  2014 was a great year for our Mighty Meghan!  It was the first year since she was born that didn't consist of a hospital stay!  It was also the healthiest year she has had since birth!  Woohoo!!!  We hope to have another great year in 2015!

Meghan is getting much better with taking her growth hormone shots.  She doesn't cry as much when she is given her shot!  We will have a check up with her Endocrinologist in a couple weeks to see how she is doing and to see if she has grown at all since starting growth hormone.  We have already been told not to expect to see much growth at the first check up, but we will see! 

We are very excited for this summer! On Christmas Day, we surprised Meghan's runner and told her that we booked tickets to fly to Maryland to visit them in early June!  We are excited to have this opportunity to visit Jenn and Ryan again and to meet their 2 adorable little boys!  While we are in Maryland, we are going to try to meet up with a family who has a little girl with Hydrocephalus.  The Mom of the little girl and I have been friends since Meghan was diagnosed. 

Otherwise, there isn't a whole lot going on with her right now, which we are very thankful for.  We - like everyone else - are doing our best to dodge the influenza bug that is going around right now.  It seems to be everywhere.

The annual Hydrocephalus Association - Minnesota walk will be held on Sunday, September 20th, so mark your calendars if you would like to join our team and walk for a cure!  I will post more information as soon as it becomes available!

Last Monday, Meghan had a full day of appointments and procedures. We started the day with a sedated MRI of her brain and spine. This took 1.5 hours. When she came back to the recovery room, she had her skin biopsies and AFP blood draw (tumor marker test). The biopsies and blood draw were done while she was still sedated so she wouldn't feel anything. After she woke up from sedation, she had her abdominal ultra sound. The last appointment for the day was with Neurosurgery. She handled the busy day very well! She is a trooper! Here is what we know so far from results. Hydrocephalus and Chiari are stable at this point. In March, Meghan's ventricles had gotten too small from her shunt overdraining, so the Neurosurgeon turned her shunt up by 1 setting. The reason he did this was because Meghan was at risk of having slit ventricles if her ventricles became too small in size, so turning the shunt setting up should increase the fluid in the ventricles and fill them up to a more normal size.  The hope was on the MRI she had last Monday, her ventricles would increase in size since having her shunt setting turned up. When the Neuro read the radiologists report from Mondays MRI, they reported that the ventricles didn't change in size...however, when the Neuro compared MRI images with us from the last MRI to Monday's MRI, they clearly increased in size. Not much, but they increased, and that is what we wanted to see! The change that we saw is on her spine. She has always had 2 syrinxes throughout her spinal cord. She now has 3 syrinxes. Also, one of her existing syrinxes increased in size. The Neuro did mention to us that when a syrinx reaches 5 cm in width, they think about placing a shunt in the spine to drain the fluid from the syrinxes. Meghan's biggest syrinx size is 3.4 cm. So for the time being, we are just watching and waiting to see what happens. We know that the possibility is there to have a shunt placed in her spine, but we also know miracles happen! The reason for the shunt is because syrinxes can cause permament nerve damage if they get too large. The abdominal ultra sound came back with good news…no tumors!  The AFP levels are within normal limits as well!  We are waiting for news on the biopsies, but it could take 1-2 months before we get results.  We got bad news that Meghan’s Geneticist is leaving Children’s to go to a different hospital out of state.  We are sad to hear this, as she has been working very hard on helping us try to get answers.  We have an awesome care team and it’s hard to see someone go.  But, I am sure the new Geneticist will be just as good!

Waiting for IV placement - pre MRI

 

 

Post MRI, biopsy...waiting for sleeping beauty to wake

Waiting for our last appointment for the day!!  Almost done!

Meghan had a pre-op a few days before her MRI.  During the exam, the doctor found that Meghan had middle ear infection in both ears.  He did a tympanogram on her ear drums.  A tympanogram tests how the eardrum and middle ear are working. This test is important because fluid or other problems in the middle ear can affect hearing. Fluid in the middle ear can cause hearing loss. During a tympanogram test, a small earphone is placed in the ear canal and air pressure is gently changed. This test is helpful in showing if there is fluid in the middle ear.  Meghan’s ear drums didn’t measure any movement and they were completely full of fluid.  She was put on an antibiotic and nasal spray to try to get the fluid to drain on its own.  She will have her ears checked again in a few weeks and if the fluid is still there, she may have to have surgery to drain the fluid.  Apparently, it is not painful when you have fluid in the middle ear, so if she didn’t have her pre-op, who knows how long it would’ve been before we found the problem.  When you have fluid in your middle ear, people sound muffled and they are hard to understand.

Growth hormone shots have been going okay.  She asks for them every night because she knows she gets a treat after the shot, but she starts to cry as soon as we get everything ready.  Breaks my heart every night, but I know it needs to be done.  We have 2 full weeks under our belt already with shots.

School is going really well.  We had our first conference with her teacher and she is doing a great job at school.  She is making adequate progress in all areas.  Speech and motor skills are still main areas of focus.  We need to decide by the next IEP team meeting in March/April, if we want to transition Meghan into a preschool class that has typical kids and special needs kids mixed together in the same class for next year.  If we all decide that transitioning Meghan would be appropriate for her for next year, she will most likely have a more one on one Para with her, mainly for safety reasons since she is quite smaller, and delicate :)  It doesn't take much to knock her over.  Right now, her class size is 6 kids.  If we would transition her, she would be in a class size of roughly 10 typical kids and up to 8 special needs kids.  The teacher said her concern with transitioning her next year is that the other preschool moves through the day at a much faster pace and she isn't sure Meghan would be able to physically keep up with the others.  Cognitively she is ready to be transitioned, which is awesome!

Meghan got to meet her runner through the I Run for Michael group!!  Meghan and Jenn met face to face for the first time on November 5th.  Jenn and her husband, Ryan, flew from Maryland to see Meghan.  When they met for the first time, it was an incredibly amazing moment that we will never forget!  They stayed with us for a few days.  We gave them a tour around town, went to Schell's Brewery, made pizza, played games, talked a lot about the different ways we talk and the different things we eat, met some of our family and made lots of memories.  It was a fun time!  They even came with us to a doctor appointment so Jeff and I could learn how to give Meghan Growth Hormone injections at home!  Meghan bonded with Jenn and Ryan pretty quickly!  Luke also enjoyed meeting them.  He got a kick out of their accent and loved talking to Ryan about farming.  Colin hung out with us on Friday night for pizza and games.  We are hoping to go to Maryland this summer to see them and meet their little boys.

 

 

 

 

Welcome signs.  Luke made the green sign.

Waiting for Jenn and Ryan to arrive...they are about 15 minutes away!

15 minutes til they are here!

First night staying with us and Jenn made us a yummy chicken casserole...with a very hungry 3 year old on-looker :)

Meghan with her bling from Jenn's latest fun run

Meghan's new Minnie dress from Jenn

Luke even got a few gifts from Jenn and Ryan.  He will treasure these forever!

Luke's new favorite tshirt

Meghan loves her Jenn :)

Showing some love

Making pizza!  This is Jenn and Ryan's Friday night tradition with their family!

Mom can I eat this YET???

The pizza making crew

There have been a lot of new things going on the last few weeks!

Last week, Meghan had her annual appointment with her Orthopedic specialist.  We also met with an Orthopedic surgeon at this appointment.  Meghan had x-rays taken of her hips, legs and feet.  This is so they can get accurate measurements of her length differences (her right leg is longer than her left).  Last year, Meghan's leg length difference was 1/2 of a centimeter.  This year, she has an LLD of 2.3-2.4 centimeter difference.  But, with the measurements of her hip, femur and tibia, she has a combined difference of 1 inch.  The increase from last year to this year is much higher than they anticipated it would be.  The specialist and surgeon discussed with us that it is likely that she will need surgery in the future on her right leg to stop the bone growth so that her left leg can catch up.  We were told surgery isn't even considered until the LLD difference is 2+ centimeters.  Meghan is slightly over that, but we are going to give it another year and see where her length difference is at that point.  She did get a new shoe lift and it is taking Meghan a little bit to get used to the new lift.  Her old lift was 1/4 centimeter and her new one is a 1.5 centimeter lift.  Her lift is now too big to fit in her shoe, so we have to send in her shoes and they will cut open the sole and put the lift in the sole of her shoe.  Because of her length difference, she is closely monitored for scoliosis.  They checked her spine and it is straight so that is awesome! 

Earlier this week, we had a consult with Neurology about the febrile seizure Meghan had a month ago.  Basically, Meghan gets a freebie pass this time, but IF she would ever have another seizure, we would need to call them and let them know and they would decide if she would need to have an EEG done.  If she would have another febrile seizure, I do not think we would put her though an EEG though, as the chance of happening to catch her having that kind of seizure is very slim, since they are brought on by a sudden increase in body temp.  We also discussed Meghan having episodes of vomiting during the night.  This only happens while we are away from home, but it doesn't happen everytime we are away from home.  She said it could be shunt related (change in pressure, position can cause vomiting), or it could be her body's way of telling us she has anxiety about being in a new environment.  Either way, we will be talking to her Neurosurgeon about this at our next appointment.  We do not need to go back and see Neurology unless more seizures happen down the road, so that is good that we do not need to add another specialist to the list!

After almost 1.5 months, we finally heard back from Meghan's Endocrinologist regarding growth hormone therapy.  She spoke with Meghan's Geneticist and they both agreed it would be good to start Meghan on Growth Hormone with close monitoring.  There are some risks to being on GH and the Endo wanted to make sure we aren't putting Meghan in a bad position by having her on growth hormone due to some of the risks.  The hospital submitted the pre-authorization to the insurance company today.  This process can take up to a couple weeks.  Once the pre-auth is complete, the prescription will be sent to the pharmacy.  The pharmacy will then mail us pre filled/disposable injections.   Once the pharmacy has been given the prescription, a nurse will come to our house to teach Jeff and I how to do injections.

The next big appointment will be on November 10.  She will have a sedated MRI of her brain and spine.  She will also have skin biopies done after the MRI.  After the skin biopsy, we meet with neuro for the MRI results.  She is also due for an ultra sound, but I am not sure we can fit this into her already busy day.  This will be a lot for her to go through in one day already.

Some very exciting times are coming up in less than a month!  Meghan will meet Jenn, Meghan's runner.  Meghan and Jenn were matched a year ago and the relationship between the two of them is pretty awesome!  I am honored to call Jenn my friend, as well!  They celebrated their 1 year matchiversary on September 29th.  Jenn and her husband will be flying in from Maryland on November 5 and will be staying with us until they have to fly back home on November 9.  We are very much looking forward to meeting them and being able to spend time with them!

Meghan continues to enjoy school.  She is learning so many new things.  Her teacher says she is a big helper in the classroom and her bus driver says she is his most enjoyable bud rider :)  He said the other kids on the bus call Meghan little girl.  I think he gives Meghan cookies on the bus every day, because that is the first thing Meghan says when she gets home :)  That is definitely the way to get to her heart...give her food and she's your BFF :)  Meghan had her picture taken for school...so cute!!

September is a BIG month for our little lady!!  The month of September is Hydrocephalus awareness & Chiari Malformation awareness month AND September 15-21 is Growth awareness week.  We walked to raise awareness of Hydrocephalus on September 7th.  Our team, Team Mighty Meghan, had 19 walkers and we raised $800 as a team, and all of the Minnesota teams combined raised $55,684 (to date)!!!  All of the money raised goes towards research to find a cure.  This was our 2nd year walking to support our Mighty Meghan, and everyone else affected with Hydrocephalus.  A huge thank you to those to walked, donated, or both!  We are forever grateful for your support! 

Meghan started Pre-school on September 2nd.  AHHHH!!  It's so crazy that my baby is in school!  There were some big tears the first time she rode the bus, but otherwise she seems to really like school!  There are 6 kids in her class.  She has a bus buddy, Wyatt.  She has OT/PT once a week and speech twice a week, while at school.  Her speech is really coming around!!!  Since school, she has learned the words me & you.

We've always known that because of Meg's neurological conditions, she has a higher risk of having a seizure than typical people.  She had her first seizure the evening of September 12.  She had a febrile seizure, lasting between 8-10 minutes, which was caused by a sudden spike in her temperature.  It was a very scary night for Jeff and I, and it was hard to see what a seizure does to a person.  It took her a while to fully recover from it.  I spoke with neurology, and because of Meghan having this seizure, they are moving up her MRI to be done as soon as possible.  At this point, a shunt malfunction is not a concern because she is not running a fever, irritable, vomiting, or hard to wake up.  They would also like Meghan to have an EEG to look for seizure activity.  Most likely, she will have a 1 hour EEG done.  She will be prescribed Diastat (a rescue medication) incase of another seizure.  The EEG and MRI/skin biopsy have not been scheduled as of yet, but should get scheduled this week. 

Finally...we got GOOD news!  This past Wednesday, Meghan had a full day of appointments which included 3 urology procedures followed by an appointment with the urologist for results.  The good news is that there is no bad news :)...except that the poor girl had to endure several hours of not-so-fun procedures.  But, atleast now we have solid answers.  Meghan has increased fluid in her kidney's because...plain and simple...that is how God chose to make her :)  There is no blockage or reflux.  Woohoo!  The Urologist basically said that since there is no medical reason for the extra fluid, he does not need to see Meghan again unless she would start having urinary tract infections, or if more bladder/kidney issues are seen on her future ultra sounds.  This is very awesome news to us!

 Meghan got to decorate her gas mask with princess stickers

Thank goodness she was able to eat during this test!

What else do you do while trying to keep a little one occupied during 5 hours of testing? 

Take a selfy :)

 

 

 

Happy Fourth of July!!!