Hello!

Just a quick post to update you all on all things Aiden.

We were so blessed to spend the entire holiday season at home this year! We did have an unexpected visitor around Thanksgiving: Chicken Pox, but the Tootster handled them like a champ and had no complications related to AHUS.

Aiden's blood pressure is finally staying within acceptable ranges after his nephrectomy (kidney removal) in September. We had to change his blood pressure medications but finally have it under control! Thank you all for your continued prayers that his BP will remain within acceptable range.

Aiden's complaints of leg pain, "ants biting" have decreased dramatically over the past 2 months, too. Since the neuropathy is not a pressing issue at this time we are no longer on any type of "fast track" for transplant. The key now is getting Aiden to a healthy wait for transplant (15 kgs or more). He is currently growing slowly, but surely and we are still anticipating that he may be ready to go on the transplant list within the next 6 months to 1 year.

Although most of his labs remain stable-good for his considering his disease process and daily dialysis, we have a few worrisome lab values here and there and it seems that this is a juggling act, of sorts, to correct. As soon as we get one lab back to an acceptable range, another is too high or low and as a result we've added/taken away medications to try to balance everything out.

I cannot tell you enough about how funny, smart and cute the little man is. He says something new (and usually hilarious) everyday and is constantly amazing and inspiring me with his sweet personality and attitude.

We are so blessed to have this sweet little man to call ours and thank God for him and for all of your prayers as well.

Please visit my personal blog: Tales of the Toot for my "mama's point of view" on raising a child with special needs/considerations as well as product reviews and an occasional giveaway. (Our first giveaway starts today...if you don't have your Aiden's Cross yet you will definitely want to check it out!)

We are still working on Tshirts and have had a hold-up with the print company we were originally working with. I am in the process of seeking other print company options and will let you all know as soon as we get something concrete in place.

Thanks for reading and for your prayers!

Christy

Wow--Can you believe that this is Aiden's very first Thanksgiving at home? We spent the first 2 in ICU at Medical City---and while we love our Med. City Family we are so happy and Thankful to be home for Thanksgiving this year!!

We are also thankful for those of you who have helped increase awareness and support a cure during this past year. Thanks for your donations to our family and to research, for purchasing your Aiden's Cross and for the T-shirts---COMING SOON!!

The "Fighting for a Cure" T's should be ready by next Friday!!! Be sure and let us know if you are interested in ordering!!!

If you have a twitter account please follow us @AidensCross . We want lots of followers so that we can spread the word and create even more awareness for AHUS. I know it seems silly, but I have no doubt that God uses the internet! LOL! 

Aiden started a new medication last week for the neuropathy pain. So far we have not seen results as far as decreasing his pain but do notice that he acts a little "drunk" the mornings after taking the med. Please continue to pray about Aiden's medication therapy and the steps that we will have to take in the near future regarding transplant. And as always---pray for a cure!!

Hello all--

Hope this finds you all well! Just wanted to take a minute to update you on all things Aiden!

First off--Thank the Lord for some good blood pressures! Aiden's BP's have gone down significantly in the last few weeks and we are so excited about that! Thanks for all those prayers--they are helping--keep 'em coming!!

Aiden's MRI results were all normal. If you remember, Aiden started having some signs of neuropathy and was complaining of leg pain and "ants" biting him. His nephrologist believes he may have uremic neuropathy but wanted to do an MRI to rule out any other causes. Now that we have those results, we are traveling to Dallas on Monday to see a pediatric neurologist. If she thinks that uremic neuropathy is a possibility, Aiden may go on the transplant list soon as there is no cure for uremic neuropathy other than a transplant.

Please be in prayer that we find a perfect donor for Aiden and that the transplant happens in God's perfect time. It's tempting to rush things, but we want what is truly best for Aiden!! As most of you know, David and I are not considered acceptable donors for a kidney for Aiden due to the possible genetic nature of AHUS. We do have a family member interested in being tested to be a live donor so maybe we will find a match there!

Sterling Grace Jewelry's website is now up and running and you can purchase your Aiden's Cross online @ www.sterlinggracejewelry.com . Proceeds go to the University of Iowa's AHUS research program. We recently sent just over $2200 in proceeds from the sale of Aiden's Cross! YAY!

We also are starting a T-shirt fundraiser! Cheryl has come up with an awesome design and we have been so fortunate to find a great guy to help us get these shirts done at a great deal! All profits will go to the University of Iowa AHUS Research! The shirts will sell for $15 and are available in black and white for now. Check it out below!!! I have just made our first order, but if you are interested send me a Facebook message, Tweet, or email me at christy@aidenscross.com with size, color preference and quantity. There is still time to get your order added to our first one!!!

Thanks so much for all of your prayers! We couldn't do it without you all. Special thanks to Pastors Tom and Charlotte McDaniels for making us feel like a part of the Lifebridge Family from Day one and for asking everyone to pray for Aiden!


FRONTBACK


Send me a facebook message or email me at christy@aidenscross.com to order yours!

With Love and Appreciation

David, Christy and The Toot!

Hello Friends! (I have to LOL that makes me think of Yo Gabba Gabba--can anyone feel my pain?)

Just wanted to take a minute to update everyone on all the exciting new Aiden stuff going on!!

First off--Aiden had his MRI today under sedation and did really well. Now we are just waiting to hear the results and hoping that it will give us a clue as to what is going on with his legs and what our next step should be. The "ants"/pain episodes are still happening at least every other day and sometimes multiple times per day. He is so restless at night and it's hard for him to get comfy and go to sleep. We are also having continued problems with his BP being high. It IS better since the nephrectomy but not perfect and we are praying that it will continue to come down to a normal level. Please pray with us about this!!

Last week I was so excited to mail the very first check to the University of Iowa for proceeds from sales of Aiden's Cross. I mailed just over $2200 to them from Sterling Grace Jewelry! Every little bit helps! I pray that the sales of Aiden's Cross grow and we are able to send more to help further research! Which leads me to my next tidbit....

www.sterlinggracejewelry.com is up and running!! You can now order Aiden's Cross online!! YAY! A very special thank you to Deborah Harter and all of the Sterling Grace team for their love and support of Aiden and this cause. We love y'all!

Many of you have seen and left comments (on Facebook) about the Tshirt idea we are working on. Cheryl came up with a really cool design and we are in the process of looking into what it will cost us to get Tshirts printed. We will then sell them and any/all profit will go to U of Iowa for AHUS research.

To help facilitate fundraising, I am in talks with East Texas Communities Foundation and hope to soon have an AHUS Fund set up with them. This will allow anyone to click on a link (I will link it from here or you can go directly to their website) and donate to a designated AHUS Fund using check, credit card, etc for either a one time gift or even a monthly pledge! When we become affiliated with them we will also have any proceeds/checks etc for any fundraisers we do made out to them. Since they are a 501(c)3 non-profit organization all donations will be tax-deductible!

The wonderful folks at the University of Iowa are getting some info together for us about the cost of research, what they do, pledge cards etc so hopefully we will have that available soon, as well.

We are working on ideas for a few fundraisers and will let y'all know as the ideas/plans become more concrete.

We are committed to doing as much as we can to help raise funds to further research for AHUS. We are going to FIGHT for a cure. Our little man (and all those like him) deserve our best efforts!!!

I hope this blog post makes sense.....Mama is running on very little sleep right now so please forgive me if my thoughts are rambling.

As always, thank you all for your continued support and most importantly prayers for Aiden. We could not do it without y'all!

Christy, David and Aiden

Happy Wednesday Everyone:

I have a couple of updates on Aiden but first wanted to invite you all out to Sterling Grace in Tyler for their Aiden's Cross "Drive" tomorrow from 4-7pm. Their address is:

So, after an awesome day yesterday it seemed our little Toot was back to his normal, 90-nothin' self! He had a great day with hardly any complaints at all. I was hoping and praying that we were done with worrying about this most recent surgery....but.....

On several occasions today Aiden has complained of "ants biting me, mama" and afterwards has either refused to walk or if I try to make him walk has a "stiffness" to his right leg and an uncoordinated gait. It only lasts a few minutes but while it's going on, he says his leg hurts and is REALLY upset. I wrote it off as his leg probably going to sleep at first but after a couple more incidents today it started to concern me because of his recent surgery.

I called Dr. Quan and was told to take him to a local dr. to be seen and have labs redrawn. (We had them drawn Wednesday and they were normal).  Took my little Tootster in to Mother's ER and after hearing my account of Aiden's symptoms, combined with the fact that he had recently had a surgery the ER doc was concerned that Aiden could have a retroperitoneal hematoma. (basically a collection of blood behind the peritoneal area). His belief was that if the "ants biting" and pain sensation were lab related it would affect all his limbs not just one but that if there was a hematoma causing pressure to the nerves it could explain why Aiden had these complaints especially after waking from sleep or being in his car seat for a little while. (i.e in one position for a prolonged period of time)

He went ahead and drew labs and as he suspected the electrolytes were within normal range and showed nothing that would cause Aiden's symptoms. In the meantime, Toot is like the car with the "weird sound" that automatically goes away when you take it to the car repair shop. He looked fine!

The only lab that was suspect was his blood count. On Wednesday's labs it was in normal range but by today it had dropped 2 points and is considered "low". This also points to the POSSIBILITY of the hematoma.

Because Aiden no longer has kidneys the local hospital will not perform a CAT scan with contrast which is what the ER doc said Aiden would need to make a definite diagnosis or rule out the hematoma. The contrast used for the CAT scan is excreted by the kidneys and well........

His (ER docs) only real option at this point was to call Dr. Quan and report his findings to  him and see what Dr. Quan wanted to do.

Dr. Quan's reply was just to "watch him" and he believes that the lower blood count could mean that the EPO dose we are on for Aiden is not enough now that his kidneys have been removed. We are scheduled to see Dr. Quan on Monday at Children's anyways so he wants us to just follow up with him then.

"What should I do in the meantime?" I asked the ER doc and was told to watch for increased symptoms of pain or difficulty walking and shock.....

SHOCK?!? If it was a hematoma and ruptured it would "be BAD"

Well isn't that nice? So, basically now I am worried sick about the possibility of this hematoma.

It could be that it is something as simple as some nerve irritation related to the surgery or maybe his legs just fell asleep a bunch of times today? Sure, it's a possibility but as those of you who know Toot know all too well...he isn't a complainer. He doesn't have time for that...too busy playing and taking care of all his Toot business! (Bossing mommy around all day). 

We are hoping and praying that it is something simple and maybe won't even happen again tomorrow.

For now I have kidnapped Gran to help me watch over the little man closely tonight (in shifts!)

I've already decided that if my little man continues to have these probs tomorrow and Sunday I will be taking him back for a repeat of his blood count at the very least and watching his BP and pulse like a hawk.

Praying that tomorrow is just a normal day and Toot just decided to scare his mama today for fun!

Please pray with us and I will update.

Please forgive if I seem a little irritated in this blog post----I am! : ( 
 
Christy

Just wanted to take a minute to update everyone on Aiden's progress!

Aiden did great during surgery and God definitely sent us the "A-team" ! Thanks for all that "specific" praying--Aiden came through the surgery with NO damage AT ALL to his peritoneum! Thank you Lord!

After surgery Aiden went to the PICU so he could be monitored closely. He was in quite a bit of pain the first night and was NOT happy about the NG tube they had in his nose. He kept saying "Mama, my nose is stuck. Get it." My poor baby--he just knew that something was stuck in his nose and he didn't like it! It was hard keeping him from pulling it out but he was pretty much getting pain medicine every 2 hours at that point and sleeping a lot. This has been the first surgery that Toot's had where he's been really able to vocalize how he feels to us and that has made it a little harder on David and I. It's so hard to hear your baby say "My tummy hurts Mama, kiss it, rub it." But as always he has held his own and did a little-better pain wise today and I am counting on tomorrow to be even better!

They held dialysis for 24 hours after the surgery to give Aiden's abdominal space time to heal a bit so it would not be as painful for him to restart it. We hooked him up on a lower fluid volume this morning and will gradually work back up to his usual volume as we make sure that he is handling it okay. So far it's going great. His drained fluid is clear and shows no sign of bleeding or injury and Aiden does not show any signs of any discomfort related to the dialysis.

He was allowed to begin eating (drinking!) clear liquids today and we will advance his diet slowly back to normal. He has had a little bit of distention in his belly from air/gas but as he becomes more active and is in less pain it should be easier for him to get rid of that!

The Tootster has had NO blood pressure medicine since Wednesday night--WOW! Now with that being said I should say that it's hard to tell where his "real" bp's are going to be at this point. He does have pain medications on board right now that are known to lower bp but he has also been in quite a bit of pain which can raise your bp. With both of these things considered I'm still excited to report that Aiden's bp has hovered from 90/50's to 120/70's - - the 120 range is still a bit high for him but again he has had NO bp meds since Wednesday and before surgery was taking 3 meds twice a day and we were still having higher bp's than this! So definitely a good sign. Dr. Quan has said that it could take up to a couple of months before all of the Renin (hormone that the kidneys were producing) is out of his body and we get a true picture of what his "new" bp is--but so far, so good!!

I cannot begin to thank you all enough for all of your prayers, comments and support! Facebook is such a great tool and I'm glad we were able to keep you updated on Toot's progress throughout the surgery. There is no doubt in our mind that God heard all of these prayers and answered them!

We had some time to sit down with Dr. Quan and talk a bit about the what the future holds for Toot as far as transplant goes. At this point the plan is to wait  to give Aiden time to heal, grow a bit and get the bp regulated--in about 4-6 months we will revisit and discuss getting Aiden on the transplant list.

Uh-oh---little man is stirring! Off to cuddle and will update again very soon!

We love y'all!
Christy,David and Toot!

Hello all--

We had our consult with the surgeons yesterday and received the call back this morning with the surgery date/time. Aiden's nephrectomy (kidney removal) will be next Thursday, the 24th. We are scheduled to check in at 7:00 a.m. and the surgery should be around 8:30 or 9:00. We will be at Medical City Childrens in Dallas and Dr.s Roden and Kadesky will be performing the surgery. Both of these are wonderful pediatric surgeons and both have done surgeries on Aiden before. Dr. Roden was formerly one (of two) of the only kidney transplant doctors in Dallas and is considered one of the best at kidney-related surgeries so Dr. Kadesky called him in to help out on the case. They will remove both of Aiden's kidneys. The procedure will take approximately 2-3 hours and Aiden will be admitted to the PICU afterwards.
 
They are estimating that Aiden will be in the hospital from 5-7 days if all goes well. Of course--as with any surgery-- there are always risks. The main risks with this particular surgery are the usual infection, bleeding, etc and (our main concern) that they will injury the peritoneum while removing the kidneys.

Because the peritoneum and kidneys are neighbors (so to speak) the kidneys often adhere to the peritoneum. The peritoneum is a very thin lining and can easily be pricked or otherwise damaged during surgery. If this happens we will have to allow time for the peritoneum to heal before we can resume Aiden's dialysis. Because Aiden is on peritoneal dialysis he/his body uses the peritoneum as a sort of membrane/filter through which the waste products, excess fluids, etc filter and then are drained out via his dialysis catheter (tube). So you can understand how this can cause problems if it is damaged during the surgery. If this happens the surgeons would place a Hemodialysis catheter while Aiden was still under anesthesia and he would have to undergo Hemodialysis (HD) while the peritoneum heals. Hopefully this wouldn't take long but it would depend on the extent of the injury. HD is the type of dialysis that most adults use and most of us are more familiar with that but it is harder on little ones in some ways, especially because of big changes in the body's fluid levels and because it is not something that is routinely done at home. As a matter of fact we have no HD facilities here in East Texas for pediatric patients like Aiden,  so if there was a long-term injury we would have to have Aiden in Dallas 3-4 days a week for HD.

Of course we HOPE and PRAY that there is simply NO injury! Then we have nothing to worry about and will just get back to business as usual! But, I like to be specific when I pray, lol so now you all know what we are praying for NOT to happen!

For those of you who wanted to know where we are and where to send well-wishes, etc for the little Tootster, here is the address:

Medical City Childrens Hospital
7777 Forest Lane
Dallas, TX 75230

Usually if you include Aiden's name, they will make sure any mail gets to us but I will update with room numbers when we get them.

Follow Toot on Twitter at @AidensCross !

Please continue to pray with us that we are doing what is best for Aiden and for God to guide the surgeons, nurses and other doctors as we trust them with our little man. We are praying for a speedy and uncomplicated recovery! We will do our best to keep you all updated next week and always. Thanks so much for all of your prayers and support. It means the world to us!

Christy, David and Aiden

Happy Tuesday!

Thanks so much for all of the comments--we love reading them and appreciate all the prayers going out for Aiden! Keep praying>>>>

We will be traveling to Dallas on Thursday to see the pediatric surgeon for Aiden's consult for the nephrectomy. He wanted to get us in "this week" for the consult so I am sure they are planning on trying to get him in for surgery by next week.  I should know more for sure after Thursday and will update then!

Aiden started his growth hormone shots on Saturday and does pretty well with them so far. He doesn't like them but he doesn't cry too much. I think he thinks it is the same as his Epo shot that he gets twice weekly so he just starts crying when he sees me coming with it. We are trying to teach him that this is different, it's his "little shot" and doesn't hurt ---but that will probably take some time.

BP's continue to be higher than they need to be but they are much improved over the numbers we were getting last week! We have had to move him back to 12 hours each night on his dialysis in order to keep the bp down but it seems to be keeping him more stable!

We are also having to watch his sodium intake which is not easy with a tot who wants hotdogs, chicken nuggets and french fries all day! Hopefully after the nephrectomy this will not be an issue, cuz little man wants what HE wants to eat!

Keep us in prayer as we travel on Thursday and I will update as soon as I know for sure more about a surgery date!

Thanks so much!!

Christy

Hello all!

First off thanks so much for all your prayers, comments, calls and support. As always it eases our burden when we know we have great friends and family supporting and praying for our little man.

Special thanks my sweet friend Terri and new friend Cathy for calling and taking time out of their busy lives to invest in some serious prayer time with me over the phone and for what followed the next day .

While we have not received the answer from God that I was hoping fror, I can say that I have peace about what we have to do. 

Although we have gotten Aiden's weight down (extra fluid off this week) - and his blood pressure is MUCH improved it is still not "normal" for a little Toot his age.  Especially considering that he is taking "adult" doses of 3 powerful BP meds. (Norvasc, Atenolol, and Vasotec) The concerns are:

Cardiovascular Damage with Continued High BP
Damage to his heart (which HAS to be strong for a transpant!)
Transplant teams will not even PUT Aiden on a transplant list with unstable blood pressure

Our options are few: we can continue the course we are on and risk damage to his heart and vasculature as well as other serious problems; we could try different BP meds and possibly end up creating even higher BP's if new meds don't work, or we can schedule the nephrectomy (kidney removal) which will probably have to be done pre-transplant anyway.

So we have to ask ourselves---are we just prolonging what is inevitable? Would it be better to do this now while he is healthy? If we try and wait it out are we doing more harm than good? Do we want to take risks that may be involved with prolonging this nephrectomy until closer to transplant time and then having back to back surgeries (6 weeks apart) or would we rather do this one now and give him ample time for a full recovery and less back to back time in the hospital?

People often ask us how is Aiden doing? When we say "good!" the tendancy is to think that things are all better, that he's running around normal and dialysis free. My friends--this is not the case. I am not taking away from the spirit and energy that God has blessed my precious son with, but to clear up any confusion even when he's doing GREAT! (and we are so thankful that he is)--even though if you saw him right now running around in his little camo overalls playing trucks and riding his trike you would think he was a completely normal 2 year old (and for this we are THANKFUL also!!)---he is still hooked up to a machine 10-12 hours a day and taking a ton of medications including weekly (and soon to be daily) shots.  And unless God's plan is to miraculously heal him (I'll take that!) that is the way it will be for him until transplant.  Please understand, I do not say this as a whine or complain--this is just to explain to all of you that even when our little man is "great!" he is still in need of your continued prayer and support.

So--back to the nephrectomy. After talking with Dr. Quan and other mom's who have faced this same decision and one who has actually done the surgery; after praying and seeking God - I find that I'm at peace with the decision to move forward with the surgery. David , after doing the same, is in agreement and we are moving forward with what seems to have to be done.

Dr. Quan would like to have the surgery done within the next 3 months---this creates a few tricky situations for us:

Due to David's lack of paid vacation days from work we will have to try and schedule the surgery around his "7 days off" that he has monthly.

His next "7-off" starts next Friday and it looks that this may be our best option for a surgery time.

During David's October "7" I will be in Iowa for a conference for the parents of children with AHUS. I do not want to miss this as it will be packed full of information on this disease, upcoming treatments and parents who are dealing with the same thing we are.

November and December (as most of you know) have been horrible for us the past 2 years and we have vowed to do whatever possible to stay out of the hospital during these months this year. We just want to celebrate a relaxing holiday season in our new home safe and sound with our little family.

So---this brings us to a surgery possibly as early as late next week or early the following week. The surgery will last approximately 3 hours, both kidneys will be removed and then he will be hospitalized for approximately 5-7 days if all goes well. We are waiting to hear back from Dr. Quan after he talks with the surgeons' group to see if they have openings. Hopefully I will hear back today or Monday at the latest.

Please continue to pray for Aiden as we ready ourselves for this. We have complete faith in the staff at Medical City and the surgeons group. They have ALWAYS been awesome with Aiden's previous surgeries, but be in prayer for them too. We want them on their "A-game"

In other Toot-related news: Aiden will soon start daily injections of Growth Hormone (Nutropin) to help him meet his growth requirements and potential. He is a little on the short side and gains weight slowly so they are hoping this will help. Most renal (kidney) patients have growth problems and we can't even get on the transplant list until Aiden meets certain size requirements (unless the need becomes emergent). I'm told by other parents that these injections aren't bad (pain-wise) and that they really help their children to grow with minimal/no side-effects. We are praying for success with Aiden and that it will not be as traumatic to him as his twice-weekly Epogen shots which burn really bad. We are also praying at God will provide financially as these injections cost almost $1100 a month--thankfully with our insurance we will be paying 238.10 monthly but even that is a substantial amount.

Sterling Grace (bless their hearts) is still working diligently on getting their new website up and running. With so many beautiful pieces to display on the site it has been a long process getting it up and running. But hopefully withing the next few weeks it will be up and running and Aiden's Cross will be on display there for all to see and order! Remember a portion of the sales is marked to go towards research for AHUS and another portion to help with Aiden's medical expenses. We so appreciate those of you who wear Aiden's Cross with pride and help us spread the word about AHUS and support Aiden. As always you can call Sterling Grace directly and order Aiden's Cross by phone as well.

Sterling Grace also has an Aiden benefit in the works for Aiden on Thursday, October 8th from 4pm-7pm. It will be in Tyler at their new store location in the French Quarter across the street from the Broadway Square Mall. I hope to see all of you there!

Thanks so much to my very sassy sista Karmi Jones and her entire family and their community in Ohio. They planned and pulled off a great benefit for Aiden in July all the way in OHIO! Aiden has fans everywhere!! You guys are awesome Karmi! We love you,  our Ohio family!

One last request---if you have the time (after reading this LOOONG update) please check out he following site:

http://www.caringbridge.org/visit/cadenledbetter

Please take time to read Caden's story and journal updates. His mom, Lexie and I met while at the coffee machine and in the playroom with our boys and they are just the sweetest family. They have a faith in God that would move mountains and that is EXACTLY what they need. Please--lift them up in prayer.

As always keep prayin' and thanks to you all!
We love you--
David, Christy and Aiden

I will update again once I know a "for sure" surgery date.