Hello all...we are back again.

Andrew has been progressing nicely.  He has started scooting around the house on his butt and propelling himself with his arms.

When Andrew is laying down he uses his arms to push his body up and then sits up.  This is a much newer activity and we are very excited for him.  This is his first step to being able to sit up completely.  Next step is to have him sit up from a lying position on his back.

Tomorrow, we are going again to see a neurologist at Children's Hospital because lately he has been shaking his head slightly.  This shaking activity seems to happen more and more.  We will keep you posted on the appointment.

Andrew still does not walk, talk, crawl or eat solid foods. 

Regards,

Lara and Jeff

Good Evening,

Andrew has a new nickname, "Scooter."  The reason we gave him this name is that he started to scoot around the house on his butt.  He moves around by sitting and using his arms to pull himself forward.  For the most part, he moves around when he sees toys he wants to get.  This is so cool because this behavior indicates that he wants to move.  He is still not crawling or walking yet.

Andrew went to the eye doctor last week.  The doctor says his right eye is weaker than his left eye.  Also, the doctor left his prescription alone...so we don't need to get new glasses.

That is it for now.  We will be away next week on a Bermuda Cruise.

I will write about Andrew's experience on our trip when we get back.

Regards,

Jeff

Good morning,

July 4th was wonderful.  We went to a friend's house for the night.  The rest of the week has been pretty quiet.  Andrew continues with his therapy and is making good progress.

Soon Andrew will be going to his eye doctor.  This will be a longer appointment where his eyes will be dilated and the doctor will check his eyesight and vision. 

I will continue to provide any new information about Andrew each week.  Have a great rest of the week.

Regards,

Jeff

Good Morning,

It has been raining for days...so much rain that in New England there has seen more rain than sun in the late spring early summer time frame.  Amidst all the rain and fog there is GREAT NEWS!  Medicaid approved Andrew's growth hormone shots for the next year.  The reason the approval process took so long is the doctor and the pharmacy was not talking to the right folks within the Medicaid system.  It turns out that Medicaid uses a third party company to review and approve all claims.  Now I have the phone number to the third party company and will be able to direct all pre-approval requests to the right group.  This is one more item taken care of...on to the next battle. 

Other news in the world of Andrew Marx.  In the last week, Andrew has started to slither on the floor.  Andrew looks like a snake on his stomach moving forward on the floor.  He may move only a foot or less when he goes forward, however, this is a great achievement.  Andrew has only slithered a few times.  His therapists think he may be ready to crawl soon.  Hopefully his muscles will be able to support his weight.

Here ia a picture of Andrew on the way home from his first haircut.





To all our family, extended family and friends following the Andrew Marx blog, have a safe and wonderful July 4th.  Take this time to appreciate all you have in this world that is good.  Lara and I are thankful for our families, friends and our terrific children.  We have learned that each of the kids are special in their own ways.

Regards,

Jeff

Good Morning,

It has been raining for days...so much rain that in New England there has seen more rain than sun in the late spring early summer time frame.  Amidst all the rain and fog there is GREAT NEWS!  Medicaid approved Andrew's growth hormone shots for the next year.  The reason the approval process took so long is the doctor and the pharmacy was not talking to the right folks within the Medicaid system.  It turns out that Medicaid uses a third party company to review and approve all claims.  Now I have the phone number to the third party company and will be able to direct all pre-approval requests to the right group.  This is one more item taken care of...on to the next battle. 

Other news in the world of Andrew Marx.  In the last week, Andrew has started to slither on the floor.  Andrew looks like a snake on his stomach moving forward on the floor.  He may move only a foot or less when he goes forward, however, this is a great achievement.  Andrew has only slithered a few times.  His therapists think he may be ready to crawl soon.  Hopefully his muscles will be able to support his weight.`

To all our family, extended family and friends following the Andrew Marx blog, have a safe and wonderful July 4th.  Take this time to appreciate all you have in this world that is good.  Lara and I are thankful for our families, friends and our terrific children.  We have learned that each of the kids are special in their own ways.

Regards,

Jeff

Good morning,

Andrew's next doctor appointment is next month to have his eyes checked. 
Andrew continues with his therapy sessions at Northeast Rehab.

Yesterday, Andrew's geneticist called to provide the results of the latest genetic test. Unfortunately, the test did not provide any new information.  The test results will be sent to us this week via snail mail.  I will review the results and share any relevant information.

I will share with all of you my frustration with the insurance companies and the state Medicaid system.  We give Andrew hormone shots every night.  The cost of the supplies and hormones were covered by our primary insurance company, Anthem Blue Cross Blue Shield and Andrew's Medicaid provided by NH.  A couple weeks ago, Lara received a phone call informing her Andrew maxed out his medical/pharmacy benefit for the year.  The max is $2000. 

I am a systems contractor and have to purchase individual health insurance.  The insurance doesn't cover much considering the high cost of the premiums. 

When we first learned about Andrew's condition, we were advised to apply for NH Medicaid.  Andrew qualified within a month after applying based on all the records we provided NH Health and Human Services.  We have been working with Medicaid to have the program cover the cost of the hormones and supplies in full. We have been waiting almost 2 weeks for an answer form the program.  This is where we get stuck in bureaucratic, red tape hell where administrators with little knowledge try and play G-D with our son's health.  They need to make a decision so we can move forward.

Also, this country needs real and thoughtful healthcare reform.  Our primary insurance company has agreements with medical providers to pay less than they actual bill.  In other words, if we were to pay the bill, we may pay 2 to 3 times more than the amount the insurance company pays the medical providers.  That is incriminating to pass on overinflated costs to average consumers.

Right now we are using the last hormone cartridge with enough hormone medicine for 6 shots.  Hopefully, everything will be settled this week so we can continue with his shots without interruption.

Regards,

Jeff M

Good morning,

Last Monday, Lara took Andrew for another genetic test.  The phlebotomist took blood from Andrew and then sent the sample to a special genetics lab in Washington (state) to be analyzed.  According to Andrew's geneticist, this test should provide more information about Andrew's rare condition.  We are just waiting for the results and analysis.

Last Friday, Andrew pulled himself up with the help of his therapist.  Then he took a couple assisted steps; he was holding the therapist's hands.  This is truly awesome.  We are so proud of Andrew and his progress.  Hopefully, he will be strong enough to walk on his own soon.

Regards,

Jeff

Good morning.

Not a whole lot has happened in the last week.  Andrew continues his therapy sessions at Northeast Rehab.  He is doing well with the pool therapy.

Andrew continues to use his walker and moving everywhere in the house.  He does a great job.

Lara and I have taken Andrew off of the stage 3 foods.  We are feeding him some of each of our meals.  However, we have to prepare the food in a special way for him.  We chop up all meats, vegetables and fruits into small bites.  then we use a binders with the food like plain yogurt, sour cream, mayonnaise, cream of mushroom soup or a combination of these ingredients.  The binders help the food go down his throat and it adds mega calories.  This helps Andrew as he hasn't gained any weight since January.  Although, he has grown a couple inches since then due in part to the growth hormone shots.  Lara and I joked about writing a recipe book with all of our culinary concoctions or we may just add a food section to the web site.  These are all calorie packed and nutritious recipes appropriate for any child needing to add weight.

Andrew has been fighting us when we feed him and give him milk.  We continue to work with him on different food combinations.  Hopefully, we can get him to consistently eat.

Regards,

Jeff

Good Evening,

Andrew started his pool therapy this week.   Andrew liked being in the water with his new therapist.  He will continue to have the pool therapy weekly.

Last Friday, Lara and I had a meeting with his occupational therapist, his feeding therapist and his nutritionist.  We discussed Andrew's progress eating new foods.  The outcome of the meeting is as follows:

Andrew is now on Whole milk; no longer drinking his special formula.  Assuming he takes to the milk, we will add on packet of Carnation Instant Breakfast to his sippy cups each day.  If he does not like the milk, or will not take it, then we may need to move onto soy milk.  So far Andrew has been fighting drinking the milk.  He takes about 4 ounces each feeding and he gets 3 sippy cups per day.

This week we will continue to give him the milk and watch him for any allergies.  We are starting to share our dinners with him by taking a small portion of each dinner we eat and blending it to a smoother consistency.  That becomes a portion of Andrew's Dinners.

Until next week.

Regards,

Jeff 

Good evening,

Andrew is very lucky...he can keep the walker until Easter Seals needs it back.  He enjoys using the walker going all over the downstairs of our house.  He moves everywhere.  Andrew is now an expert with the walker.

Starting next week, Andrew will have pool therapy.  This is exciting because he won't have to fight with gravity to use his muscles.   Maybe this new therapy will bring him closer to walking.

Andrew still enjoys using the sippy cup...way to go son!

Not  a whole lot to say this week.  Andrew is till a champ considering all he goes through.  One note. Mom is also a champ because she deal with all of his tantrums and his fits.  She is the best!!!!

Regards,

Jeff