Fundraising Update and Other Ramble...

I wish I could fix whatever is wrong with me :(

Nathan specifically wanted eggs today.  He was a really happy guy when he got them :)

 Alana had surgery today.  She hurt her ankle awhile back and they were hoping it would heal but it didn't and she ended up needing surgery.  I believe she tore a tendent but don't quote me on that.  Surgery went well though.

I've been doing really good with my insulin.  However, it doesn't seem to be helping my blood sugar at all.

This is EXACTLY what I want to do with the kids clothes I have saved.

Kaedyn is so funny .... love this little dude.

http://www.gofundme.com/4t7h6c. ... Even just sharing on your social media can help greatly. Both boys had muscle issues that make it difficult to walk long distances (even short ones), getting one push chair would be amazing for both of them to use when needed. ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬ ‪#‎trisomy‬ ‪#‎MT16‬ ‪#‎MosaicTrisomy16‬ ‪#‎autism‬ ‪#‎AutisticWonder‬ ‪#‎Aspergers‬ ‪#‎ASD‬ ‪#‎RussellSilverSyndrome‬ ‪#‎RSS‬ ‪#‎growthdisorder‬ ‪#‎DandyWalker‬ ‪#‎Polymicrogyria‬ ‪#‎CleftPalate‬ ‪#‎kidneydisease‬ ‪#‎feedingtubeawareness‬ ‪#‎feedingtube‬ ‪#‎gtube‬ ‪#‎tubiekid‬ ‪#‎tubielife‬ ‪#‎SuperNathan‬ ‪#‎TheBoyWhoLived‬ ‪#‎toomanyhealthissues‬ ‪#‎fundraiser‬ ‪#‎needhelp‬

I guess this is still classified as a stroller.  We need something that works on many different terrains and ... I don't want it to advertise that "hey my child has medical issues" ...  I need something that will work for both Nathan and Noah... so I need something can hold up to 100lbs, but Noah is close to being 100lbs now... so I'm thinking we should go with the one that holds 150 lbs...  but we like the red one.  The other choice is blue.   We really really really need this.  Conventional strollers won't work because they only hold up to 50lbs, Noah is over that, Nathan is close.  But this is what it looks like.

Cupcakes!!!

Calahan drew Nathan's feed bag tonight.

Scully: (on phone) Mulder, we are supposed to be doing background checks, not chasing X-Files.

Mulder: (on phone) Scully, Spender just round filed this case - it's unconscionable.

Scully: And what do you call rooting through his trash?

Mulder: Like that's any different from the assignment we're stuck with.

Scully: "We," Mulder? I'm stuck with it. You're not here.

---

[Wayne comes out of the house to see Mulder encouraging the three boys to play with his car.]

Wayne: (annoyed) I want those kids out of my car.

Mulder: (cheerfully) Okay, speed racers. That's enough driver's education for today.

Sheila: Oh! We were beginning to worry that you wouldn't make it. Is this your first time in a TV studio? How exciting. I couldn't be happier for the two of you.

Scully: I'm not su-

Sheila: (runs over to get Holman, then brings him back to them) Holman, I'd like to introduce you to the Gundersons.

Holman: (shaking their hands) Congratulations! I hope you have a truly romantic getaway.

Sheila: Aren't you glad you watch Channel Five weather?

Scully: (showing badge) We're Agents Mulder and Scully. We're with the FBI.

Sheila: FBI? Oh, my goodness! I thought you were the "Watch the Weather and Win" contest winners.

Holman: See, we haven't had any rain in months and... well, people tend to blame the messenger.

Sheila: Oh, there's the Gundersons. Over here!

[The Gundersons, an older, plain-looking farm couple come over. They look nothing like Mulder and Scully.]

Mulder: (smiling at Scully) It's like looking in a mirror.

---

Mulder: Scully, I don't think it's a coincidence that a cow gets hurled at me just as we're down here investigating the weather.

Scully: (checking his scalp and forehead) Mulder, did they check you for head trauma?

Mulder: I'm telling you, that cow had my name on it.

---

Scully: (on phone) Mulder, it's me.

Mulder: (on phone) I'm on my way.

Scully: I'm not so sure. Have you looked outside lately? It's pea soup. Our plane can't take off until after this fog lifts.

Mulder: Fog? (looks accusingly at Holman) Holman!

[Holman shrugs.]

Scully: Holman?

Mulder: Yeah... he wants advice. Dating advice.

Scully: Dating advice? From whom?

Mulder: Yours truly. (VERY long pause) Hello? Hey, Scully. Scully, you there?

Scully: I heard you. Mulder, when was the last time you went on a date?

Mulder: (pauses; in a controlled way, one word at a time) I will talk to you later.

Scully: (to herself, after hanging up) The blind leading the blind.

---

Scully: (about Sheila and Holman) Well, it seems to me that the best relationships - the ones that last - are frequently the ones that are rooted in friendship. You know, one day you look at the person and you see something more than you did the night before. Like a switch has been flicked somewhere. And the person who was just a friend is... suddenly the only person you can ever imagine yourself with. (seems to realize she could be talking about herself and Mulder)

 [Scully enters Skinner's room at the hospital. He looks very sick, but smiles as she enters.]

Scully: Sir, there's something I'd like to try. It's a treatment called therapeutic plasmapheresis. It requires filtering all of the blood in your body. It's a radical procedure and there is a danger that your body might go into shock.

Skinner: I'm in your hands. (weakly) I think I owe you an apology, Scully. You and Mulder.

Scully: Sir?

Skinner: I've been lying here thinking. Your quest... it should have been mine.

Scully: What do you mean?

Skinner: If I die now, I die in vain. I have nothing to show for myself. My life...

Scully: Sir, you know that's not true.

Skinner: It is. I can see now that... I always played it safe. I wouldn't take sides. Wouldn't let you and Mulder... pull me in.

Scully: You've been our ally more times than I can say.

Skinner: Not the kind of ally that I could have been. (Scully touches his wrist gently)

Mulder: So they're splitting us up, huh?

Scully: (firmly) No.

Mulder: No?

Scully: This is a one-time thing.

Mulder: Who told you that? Obviously, if you do a good job they're not going to stick you back here. (Scully sees Ritter coming in) Right?

Agent Ritter: Agent Scully, we're all set.

Scully: Peyton Ritter, this is Fox Mulder.

Agent Ritter: It's a pleasure to meet you, Fox.

Mulder: (stays seated; polite, but unenthusiastic) A pleasure to meet you... Peyton.

Scully: We should get going.

Agent Ritter: Off to New York.

[The two of them leave; Mulder watches them go wistfully.]

---

Scully: (on phone) Scully.

Mulder: (on phone, disguising his voice jokingly) Hi. My name is Fox Mulder. We used to sit next to each other at the FBI. (both smile)

---

Scully: (on phone) I don't know what to think. (looks up as Fellig passes her) He's, uh... unusual.

Mulder: (on phone) As in he, uh, plugs up like a cork when you stab him? (looking at an image of Fellig's stab wounds on his computer)

Scully: Mulder, where are you getting this stuff?

Mulder: Well, young man Ritter has been sending progress reports to Kersh. My computer may have inadvertently intercepted a few of those. He's got nice things to say about you, though... mostly. Why don't you let me do a little background check on Fellig for you.

Scully: Mulder...

Mulder: Come on. It's, you know... it's what I do now. I'm getting good at it.

[Scully sighs.]

---

Scully: He's right. Tell me, Ritter, did he have any help concocting that story?

Agent Ritter: (defensive) Look, Fellig is a murderer. Whether or not he did this specific one, I don't care-- not if it buys me a few days in the box with him.

Scully: No judge is going to issue a warrant based on this.

Agent Ritter: No, no, no. I know the judge. We'll have it by noon. (she stares at him in shock, then turns to leave) You know, Kersh warned me about you.

Scully: Uh, he did?

Agent Ritter: Yeah - you and your partner. God knows his reputation precedes him so I guess I should have seen this coming. You muck up my case, and Kersh'll hear about it. Are we clear, Dana?

Scully: (coldly correcting him) Scully. (cell phone rings) And we're done with this conversation.

---

Mulder: (on phone) Hey, Scully, uh, how's that X-File coming? And before you tell me that it's not an X-File...

Scully: (on phone) It is.

Mulder: What happened?

Scully: Alfred Fellig seems to know an awful lot about death.

Mulder: Oh, yeah? Well, that's not surprising, given that he's reached the ripe old age of 149.

---

Mulder: Want to know what L.H. Rice's birthday is? April 4, 1849. I'm not good at math, but I'm figuring that's a whole lot of candles on the cake.

FUNDRAISER!!!!

.
It's hard to believe that I wrote this up ..... like... seven years ago (it's not 7.24.18) ... Noah is now 16 and Nathan is now 11. 

Our needs have changed some.  We have gotten a couple hundred dollars for the boys, used it to get back and forth to appointments (gas) ... and other things they needed.  Like oral chewies for Nathan who puts everything in his mouth.  Also got him a feeding tube back pack so he could do continuous feeds, however - at this moment, we haven't used his g-tube for awhile.  We are hoping to just remove it at some point soon and being done with it because he has been (or had been when we stopped using it) he had been throwing up whenever we used it.   He has lost some weight, but not a whole lot. 

We got to attend a SOFT conference and it was amazing.  It was local so we drove to it each day and slept at home.  It was a lot but it was so so so worth it.  I want to go again.  I think DB does too!  I think even Noah enjoyed it. 

Beyond that... we do still need the stroller.  Nathan doesn't have the strength most days to do a lot of walking and the stroller would be amazing. 

The biggest thing is that we want to take the boys to Disney.  We want to take them there to get them away from the "normal" of doctors, shots, blood draws, more doctors, fear, anxiety, and every other thing that they deal with on a daily basis.  It's hard on them, it's hard on us, and we just want them to have a break and do something magical. 

There are also things that insurance still doesn't cover that we pay out of pocket for.   So literally, any little bit helps. 

We prefer paypal donations because GoFundMe takes a portion.  The email to use for paypal is Mammarazzi13@aol.com ...  (don't email it, I don't check it.  But I also have alerts going to the email I do use) 

This is their current GoFundMe ....

That is our hope. 

Some of you may know our family, some of you, maybe not so much. Our family is unique. We are a family blessed with 4 boys, however two of these boys are unique boys. Our 11 year old has an extremely rare genetic disorder called Mosaic Trisomy 16. During the pregnancy I was told he wouldn't survive, he wouldn't live…. But they were wrong. He was 1lb 12oz at birth and now he is 11 years old, still small for his age, ...but the most important thing, he lived! Proved that miracles happen.  He does have ongoing issues with his kidneys as he almost died in 2007.  And he has pretty bad hearing loss in his left ear, along with sensory issues.  

You can read more at  NOAH'S STORY ... and  NATHAN'S STORY STARTS & NOAH'S STORY (Cont)

Then the addition of baby #3 brought on more medical issues. We didn’t hear “he won’t live,” with him – maybe because they knew I didn’t care, because I would not terminate a child that God had blessed me with.

Nathan was 3lbs 4oz at birth, and he was diagnosed with brain issues, a high closed cleft palate, and various other things… then, after a few years we found out he has a rare disorder called Russell Silver Syndrome. It is a type of dwarfism, or growth disorder, and it causes a lot of issues. Nathan does have a lot of issues, he doesn't grow well - because of this he has daily shots of Human Growth Hormone. We have seen it helping. He has terrible night sweats. He has a really hard time communicating. Usually babies have a wonderful vocabulary by the age of 2 and with Nathan, we are both still getting super frustrated sometimes. Nathan also has sensory issues and was diagnosed with Autism. All these things can be linked to his Russell Silver Syndrome. Don’t get me wrong, Nathan is an amazing child, he is very smart and he can light up a room in a few minutes flat.  He also has severe Sensory Integration Disorder ... 

Click Here to read a continuation of
NOAH & NATHAN'S STORY CONTINUES ......

It isn’t easy having two kids with medical issues, or four for that matter, cuz Calahan has medical issues and so does Kaedyn, but not like Noah and Nathan... I know – things could be a lot worse. I could have lost them at birth, but luckily, I was blessed with these amazing kids.

Because we put our kids first, we don’t have any savings, we live day to day, trying to make the best of the money we have to spread over the cost we have. 

Getting to an amazing conference like the one the MAGIC FOUNDATION is putting on for kids with “SGA” (small gestational age) which both boys have, and most specifically Russell Silver Syndrome, which the DRs have finally settled on, we need to count on the generosity of others. With each year that passes and listening to families talk about what a GIFT it is to go because the kids are always amazed that they have found others that are JUST LIKE THEM.  I feel it’s so important to go and to not only have the chance to meet other families, and Nathan meet other kids that are just like him, but to be able to learn and educate ourselves about specific issues that Nathan faces or will face, along with SGA issues for Noah. In addition to all that, we’ll have the opportunity to meet the leading Doctor in Russell Silver Syndrome and maybe getting some line on how to help him better from her expertise. We have been trying to get to this conference since 2011.  We always hope.......... next year.

It is important to try to get to this conference, and if we can’t make it this summer, we will definitely keep the money in the bank to save up to go for sure next year.

Nathan just turned 6, but he is only the size of a 2 year old… 28lbs and 38 inches. He’s tiny for his age, but he has an amazing little man! Even though I am hoping to take both boys to the conference – this is more for Nathan then for Noah. 

In addition to the conference - there are a lot of expenses that insurance won't cover and we have to pay for out of pocket.  Example:  Pediasure, a higher calorie drink that Nate needs to drink 3 of a day.  Diapers, who knows when Nathan will finally be fully potty trained.  Medicine, insurance won't cover some of them, especially those that we can get over the counter, and getting them flavored so he'll actually take it.  Gas too and from the clinics an hour/hour & a half or more away (not to mention needing to eat those days.)  Then there are the sensory tools we have to pay for.  We need to get a Tablet for Nathan.  AND we very well may have to get his Alternative Communication Device paid for ourselves - it's already been denied once.  And there is the dental work that Noah needs - desperately - that insurance won't cover.   Everything adds up, and our money only stretches so far.  

IMMEDIATE NEEDS:

Nathan - Insurance is not going to cover his Alternative Communication Device.  Our trial with it has proven this is the way to go with him.  He caught on super fast and no frustration!!  Sadly, the device is over $5,000 out of pocket!  We REALLY need help!!

Noah - Braces.  Insurance doesn't cover braces.  This isn't a cosmetic need to straighten out his teeth, this is a MEDICAL need to fix his teeth, surgically bring down the teeth that are growing horizontally in his jaw, to fix the over crowding and bring out the teeth that came in behind other teeth.  His mouth is so messed up.  This is also going to be a huge expense.  PLEASE HELP!! 

Every little amount helps!!! 

Any and all donations will be used ON THE KIDS for these items they need.  Anything can help and will be appreciated.  If you would like a thank you note, please send me your name and address to my email.  (click on the email graphic) 

If you would like to do a fundraiser for the boys, yourself, please let me know & if there is anything you need.

Here is our fundraiser at Fundrazr ....  (click on the picture to be taken to the link) 

If you want to make a donation please contact me for the address, or if there is another way (Paypal -the donate button on my blogs - or doing your own type of fundraiser) you want to donate, please let us know!!

The Magic Foundation is also asking for donations - they are raising money to update our RSS Bible!   It is a great comfort and a great resource for parents of SGA and RSS and other Growth Disorders. 

If you want to read more of Noah & Nathan's stories, please click the links at the top of this page.