Sunday, July 5, 2015

A few "firsts" while I was away

As any parent does, we like to celebrate "first" time things. This is what we celebrated while I was away from blogging....
Touching his nose!
 Our son has never had the muscle tone, or the interest, to touch his face. For a few months he was grabbing at his ear. A few days leading up to this he had his hand on his cheek. He was even rubbing his eye! But on this day he actually touched, and held on to, his nose! It was an amazing sight to see. He also now enjoys it when we take his hand and "honk" our nose with it. Now we just have to get him to do it with his other hand, but we are loving this right now!

We also got to test this sweet baby out...
Standing in a walker is fun and exhausting
The lady in the picture is his Physical therapist that has been coming out to our house for almost 3 years now. The walker is called the Drive Trekker Gait trainer, and it is new to the market. The company has loaned out a few for therapists and families to try.

We only got to try it for a few weeks, and he never actually took any steps on his own while standing in it, but this gives us hope!
The day we got his wheelchair, I cried tears of sadness. I knew it was what he needed, and we couldn't carry him everywhere forever. But that day I felt like the world had given up hope for our boy. This was it. He was never going to walk, and everyone knew it. I didn't want to give up. I don't think anyone ever wants to have that feeling. But there it was, in plain sight, for everyone to see. When out in public everyone would know, from a distance, that something was wrong with our child. They would see the chair and not the cute little boy sitting in it. So yea, I cried. 

I also cried on the day we got the walker. But these were tears of joy! This meant that someone actually believed that he could walk! He has grown. His core body muscles are stronger. His head control is great. And he can even sit for about 5 minutes on his own, without support! So he is ready! He is ready for the next step...literally. This is a great gift. I am not sure if he will ever be able to walk on his own, but this is were it starts. Our little boy is getting so big...and making great strides. :)

I would love to hear stories about your child and their "firsts" so leave a comment or shoot me an email!

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Wednesday, July 1, 2015

What happens when it seems to never end?

 We have all seen someone's story go viral. Whether it's a child with cancer and their local community shows their support through social media and fundraisers or a story makes national news because they are a celebrity. In most cases, I think it is great. Most of these people need our prayers and support, even if we don't know them personally and may never meet them. There really is power in prayer. Most of these stories though, are a temporary situation. 

But what about the chronically ill, the medically complex, and the people that always seem to have something. Do you roll your eyes and say "Not again", or "They are just looking for attention". Do you get sick of hearing about their problems and think "I got my own problems. I can't deal with theirs too." When they first get diagnosed, do you offer to help but after they take you up on your offer for the 100th time, do you stop offering. Have you gotten so numb to "praying for them" that you don't really mean it anymore?

This can be a tough spot for everyone. A life that involves a lot of hospital stays, doctor visits, and coordination of a lot of different things is not "normal" for anyone. For those with complex issues it becomes a bit more normal (because we deal with it every day) but we know that it is tiresome, and not normal.

It is also not fair. Most of us didn't ask for this life. Most of us, at times, get mad at the hand that we have been dealt. All of us are just trying to keep pushing forward to make it to tomorrow, mainly because we have no other choice. We tell you what is going on (again) because we need your prayers. We need your help. We need your good thoughts. And if you ever need that from us, we will be there. If you ever get put into a situation that is not "normal" we will offer to help in any way that we can. Because you were there for us. Because we know how scary and tiresome it can be. For some reason we may even feel more connected to you than before. And while you are just trying to wrap your head around what is going on, you may feel like we are smothering you by always asking if you need anything.

So what happens when it seems to never end? 

For the people that the situation directly affects; just keep breathing. Keep moving forward. Keep your eye on what is really important. 

For the people that are friends or acquaintances; do what you have to do. If you need to take a break from the situation then do that. If you want to offer your time to help out then do that. If all you can do is say a little prayer for them then do that. Their situation is not going to change any time soon and they will find a way to get through. Just try to put yourself in their shoes. Be nice. Don’t cause more drama. Don’t roll your eyes and think they are just looking for attention. And remember that it could be you someday.

 No one can see what the future holds. But know this, if you are ever in need, we will be there for you.
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Monday, June 29, 2015

More updates for the readers of X-Linked

Because I was gone from the blog for so long I thought I would give all my readers some more updates on what they missed out on. (FYI if you click on the "Follow Me" buttons at the end of this post, you won't miss out on so much. It is way faster to update a status or add a pic then to write out a whole post ;) ) I also don't want to make this post too long so I am going to split it up into a few different ones.

This month brought something new and something familiar to us... RSV and a hospital stay.
Always smiling

Loves the big yellow balloon
Up until the age of 2 he was able to get an extra shot during flu season that would prevent RSV, but this year (just because he is 2) he didn't get it. AAAnd that landed him in the hospital. He was there, visiting his long time friends (aka nurses and other staff), for 6 days! He handled it very well and after a few days still managed to give me a smile every time the camera came out. That kid. That smile. THAT is what keeps us going. It is our payment for everything else we have to go through, including sleeping on a very uncomfortable couch in the hospital for 6 days.

We signed up for our first 5K! The #denimdash2015 was a great cause. We raised money for people with Rare diseases everywhere. This money went to helping people get connected to other people with the same disease, funding to help with medical costs, and research to find cures. This is the team fundraising page... L1 legends To find out more about Global Genes and how they may be able to help you click HERE

Raising money for a good cause
 This is also the time of year when the sap runs through the trees and gives them nourishment to grow. It is also when people tap the trees to make maple syrup. That is what we did in March. This is not a hard process, just very time consuming. AND to cook it down from sap into syrup takes even longer. It takes 30-40 gallons of sap to make 1 gallon of syrup! It took us just over a week to cook.

Cooking down maple syrup

Even though it is a lot of work, the ending result is so sweet. Everything tastes better when you make it yourself!

It is so sweet!

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Saturday, June 27, 2015

Cords, cords, and more cords! Cords Suck!

Cords Suck!
When our boy gets the slightest hint of an illness, that means all of our "extra" cords and machines come out from storage and back into our living space.
Back on oxygen, and O2 monitor

Nebulizer treatments

 Just over a week ago, dad came home from work and was not feeling good. A few days later, I got the same thing but not as bad. A few days after that, this kid started showing signs of getting sick too. We took him in to see the doctor and decided to keep him out of the hospital, but start a very intense preventative routine at home.

The routine looks like this: 
  • Stop all oral feedings and run everything through the gtube, at a slower rate then normal. If needed, switch to pedialite and stop formula.
  • Start oxygen during the day and increase it at night through the bipap.
  • Give nebulizer treatments, with 2 different medicines, and inhaler treatments along with chest therapy, 4x per day.
  • Give more nebulizer treatments every 4 hours at night, if coughing.
SO now it takes 1.5 -2 hours, to get one feeding in. It takes about 15-20 minutes to the nebulizer and inhaler treatments. Add another 18-20 minutes for the chest therapy. And that folks, takes up most of the hours in a day. Not to mention the fact that we are restricted to how far the oxygen tubing will reach.

Now we do have ways to make everything portable, if we need to, but we have limited time on all of it because an O2 tank may run out or a battery may die. It is just easier to stay inside.

I should mention that we have, and use, all of these machines already but most of what he needs on a normal day is just run at night. He has oxygen, and the O2 monitor run every night for his sleep apnea. He gets inhalers and chest therapy 2x a day, every day. And he gets fed every day and night...duh. 

I hate seeing him sick but he is responding very well to the added daytime routine so I think we will be able to stay out of the hospital! Yeah!!!

I am just taken back to when he was younger and needed this routine every day. I am so thankful for how far he has come. I am happy to be cord free during the day and forget very quickly how much it sucks to have cords. 
7-26-13 Hooked up to O2, monitor, and gtube feeding

This was a GREAT day!

When you are hooked to cords...
  • you trip on them. 
  • you are restricted to one or two rooms in the house.
  • your kids finds them convenient to pull on.
  • it is hard to go anywhere, unless you want to carry a lot of stuff around.
  • your living area gets a lot smaller and hard to move around in.

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Tuesday, June 23, 2015

Life with a medically complex child is... complex

I really wish the title of this post was false. But it is not, and sometimes life sucks.
I am hoping that by posting this, other people may realize how hard it can be, can find comfort in knowing that they are not alone, or maybe have a solution to this mess.
I am trying to
There are several different issues that are going on right now. That's what makes this so...complex. So here it goes.
1) A few months ago our son had a sleep study done. It showed that the bipap machine he was on wasn't doing what it needed to do for him anymore. The doctor wanted to switch to a different bipap but it wasn't FDA approved for kids that small. The doctor compromised for a machine that was FDA approved and could do the same thing.
 THE PROBLEM: this new machine is a ventilator. Even though we weren't using it as a ventilator, our nurses (that weren't vent trained) had to spend a lot of money, take time off, and sit through a 8 hour class to get trained. This also meant that a new care plan had to be submitted to the state so our nurses could get paid.
 THE SOLUTION: our nurses got trained and a new care plan was sent off for approval.
 THE PROBLEM: 3 weeks later his monitors are going off MORE then they were before and the machine does not appear to be working as well as they had hoped.
 THE SOLUTION: have the doctor sign a form saying that it doesn't matter what the FDA says about this other bipap machine, he needs it and he will get it no matter what. AND submit another care plan to the state (now our nurses have more training then they need for this case)

1) Our machine supply company did not tell our doctor that in order to get this other bipap all they had to do was sign a form that made what the FDA said irrelevant.

 2) Our nurses spent a bunch of money that they didn't have to.

 3) I was not notified, by anyone, that we were getting a new bipap until the supply company called and said they wanted to drop the machine off that night.

 4) We got the new bipap on a Thursday and the doctor was off Friday and through the weekend, and didn't give us any instructions or orders for our nurses to follow. Just like in a hospital setting, our nurses can't do anything with out a doctors orders. In our case, every order has to be written down.

 5) Thursday night, the new machine was alarming every few seconds. When I tried calling 2 different "after hours/emergency" numbers for the company that supplied the machine, I got nothing. One said they would call back and didn't and the other hung up on me. Customer service has really gone down the crapper with all of these companies and I wish there was a way I could report them. Or get enough people to ban together and make the companies fix their ways!

2)We got a letter at the beginning of this month saying that SSI has over paid us for the last 3 years and we owe them almost $5,000! And they are stopping his medical coverage until we pay them back!

Let me explain what happens in SSI. They have an algorithm were they take the most money that the law allows them to pay out ($733) minus the "income they count" and that is what they pay us. To figure out the "income they count" they take our wadges minus the allowance for ineligible children minus $200 (not sure where they pulled this number from) minus $65 from our wadges (again, not sure where this number comes from) minus 1/2 of that subtotal minus $1,100 for our (the parents) living allowance. That equals the amount they use for the "income they count" The best part is this is an estimate on what we MIGHT make 2 months from now, based on the pay-stubs from last month that I send in. That estimate is what we get paid. So for the last year, we have actually have had pay-stubs to send in. The 2 years before that, we were self employed and all SSI had to go off of was our taxes, that were filed once a year. (Are you confused yet?)

 1) Money that we don't feel we actually owe them because it was their stupid calculations that determined what we got paid in the first place. 
 2) All of our sons medical supplies which include, oxygen, gtube replacement buttons, gtube bags and extensions, HIS FORMULA, and all of his medications.
 3)We also will lose all of our nursing care...20 Hours A DAY!
 4) All of his coverage for the 20+ doctors that take care of him. We will have very high medical bills and won't be able to give him the care he needs.

THE SOLUTION: We are filing an appeal for the money that SSI is saying we owe and we are trying to get on a different program to cover his medical bills, supplies, and nursing care but won't pay us any money. In the state of WI it is called the Katie Becket program. (at this point I could care less about the money, I just want my baby to get the stuff and care that he needs)

3) We have our first IEP meeting with the local school on Thursday this week because our early intervention therapists (in the state of WI) only come out to a child's house until they turn 3, which will happen next month. Then he will be in school in the fall of this year (where did that time go?) This is not really complicated but it is an added worry and stresser

4) We are having a few hiccups in our nursing coverage and are having a hard time filling all of the hours that we have available. If we don't have nursing coverage then we have to do it. This may not seem like a big deal to some ("Be a parent and take care of your kid", kind of attitude) but for a child that has so many complex issues, this is a big deal.

Thank you for letting me vent my frustrations. I know that things will work out...eventually. If you have any stories like these, I am sorry for what you are going through and I feel your pain. Tell me how you have dealt with your issues. I am willing to listen to any suggestions that anyone my have,. Thank you
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Monday, June 22, 2015

We are having a baby girl!

We are having a baby girl!
Baby girl

SO what does that mean for us, with this whole genetic thing? 

X-linked Hydrocephalus only affects the boys. Meaning, boys are the only ones that get hydrocephalus and all of the other medical complications that go along with this disorder. Girls may be carriers of the gene mutation, but are not affected. If a girl is a carrier, then when she starts having babies, she may end up having a boy with this disorder. If you want more details then click HERE

With that being said, this baby girl is completely normal and doing well. She may be a carrier but we won’t know for sure until she gets tested. As of right now, we are not getting her tested until she is ready… many years from now. 

This pregnancy is definitely different then the first 2. I am crying more. My skin is greasy. I don't have as much heartburn and I can breathe! We are excited to meet her and can't wait to watch her grow.
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Sunday, June 21, 2015

Happy Father's Day!


Our Family photo from 2014
Happy Father's Day to all of the Dads out there, to all of the people missing their dad, to all of the men that have stepped up to raise children that were not theirs by blood, and to all the Mom's who pull double duty and try to fill both rolls! I hope you find time to relax and take in the meaning of this day and the roll you have.

A Dad is not someone that just helps conceive a child. A Dad is someone who is there for a child, no. matter. what!

A Dad shows a child how to live in good times and in bad times.

A Dad shows boys how to become men, how to treat women, and how to be a leader.

A Dad leads by example, not by words alone.

So many men today have abandoned their roll as Dad. They have become wussy and scared. They don't step up to the plate when a women tells them they are going to be a Dad, and it is having a devastating affect on our society. Boys are stuck being boys. They have no roll models that teach them how to be men. The boys don't know how to take responsibility for their actions. They don't know what to do when life hands them lemons. They don't know how to control their emotions (like anger) and do stupid things that have a lasting, and life changing, affect on themselves and the people around them. No one is teaching them how to be leaders. This is one of the reasons why there is so many problems in the world today. Why there is so much violence; And so much hate; And so many women getting abused. We are loosing our leaders.

So for all of you that are actually filling your roll as Dad, I applaud you. We honor you today. (It really should be every day) YOU are filling a huge roll. YOU are teaching a child everyday, what it means to be a man. YOU are molding today's children into leaders of the future. YOU are showing the girl's how they should be treated, not how society thinks they should be treated. YOU have a heavy burden on your shoulders and it is not an easy load to carry. You may stumble and not always get it right, but YOU can fix it. I know that YOU are doing the best that you can... and the kids see it too.

Have a very Happy Father's Day!
We love all that you do

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