Sorry it has taken so long, but here is the HUGE thank you post I have been looking forward to writing!
First, I'd like to thank every single person who has taken the time to read Maddox's story, taken time to think about him and his family, and/or pray for them!
Thank you to all of the AMAZING people who came out and walked for Maddox and spent a few hours with me having a good time! I look forward to doing it again next year and hope to see every single one of you there again!
I also need to thank those of you that were a little early and pitched in to help set up, it was a HUGE help and also those of you who helped with the clean up! I have some great friends...thank you!
I have to give credit where credit is due...
I had a lot of great sponsors and donors for raffles and people who donated time that must be recognized!
Maddox's Miles For Spina Bifida was sponsored by:
C.A. BARRS Contractor, Inc.
757.898.7282 phone
757.898.1282 fax
www.cabarrs.com
Peninsula Electric Motor
757.873.1273 phone
757.873.3033 fax
www.peninsulaelectricmotor.com
Paws Concrete, Inc.
804.695.1951 phone
www.pawsconcrete.com
Ace Handyman
(need to get info)
I asked friends to volunteer their services for Maddox's Miles For Spina Bifida and they obliged! :-)
Ricky Firth volunteered his time and DJ services and equipment. You can book him for events by calling 757.504.8169
He also plays guitar and sings!
Callie Hardman DeKeuster and her husband Matt volunteered their time and their great eyes for photography to take pictures during the event. I have been a fan of Callie's blog and pictures since she started her blog (and I'm THRILLED that she's decided to become a full time photographer!!!), so I asked if she'd take some pictures of the event for me and it was one of THE best things I did! It wasn't until I looked at the pictures that Callie took that I realized how busy I was (I guess). Seeing the pictures, I was able to see how the event REALLY went. Maybe I was too IN it during the event, I don't know. I received so many compliments during and after the event and after seeing the pictures, I could SEE why. I really can't explain how wonderful it was for me to be able to really SEE the event and for that, I am so thankful to Callie and Matt. I knew I wanted the pictures for the blog, but I didn't realize how much enjoyment I would get out of them, I knew they'd be wonderful, but they really were my window into the event. I encourage you all to check out Callie's blog and consider her for your next event, family portrait, or special occasion. You can read all about her, check out her beautiful work and contact her through www.calliehardmanphotography.com
Karen Kennedy Insurance Agency Inc. sponsored a snack table for the event and provided fresh fruit and granola bars. They also handed out water that was donated by Food Lion. My friend, Nikki, works for Karen Kennedy Insurance Agency Inc. and she worked the snack table at the event with some support from her co-workers! While at the event, Karen said, "We are happy to support Maddox's Miles For Spina Bifida. As a State Farm Agent in Newport News, I have the opportunity to meet many wonderful people in our community. Being there is very important to us and it is why we are here for Maddox."
Karen Kennedy Insurance Agency Inc. can be reached by calling 757.873.1339 or by going to their website www.KarenKennedyIsurance.com
Now I need to thank and give credit to the wonderful people who donated all the GREAT raffle items!! They brought in a great amount of money for my little Maddox! Thank you to everyone who bought raffle tickets, too!
All of the childrens' raffle baskets were purchased and put together by the wonderful Kirsten Wolenski, who brought them down all the way from New Jersey! Thank you Kirsten and Adam for coming down for the event, for helping prepare, set up, and clean up!
The pink Coach wristlet was also donated by Kirsten Wolenski!
Manhattans New York Deli & Pub provided TWO gift cards! They are located at 601 Thimble Shoals Blvd in Newport News. Their phone # is 757.873.0555 www.manhattansdeli.com
There was a beautiful pair of Silpada earrings donated by April Carr! Her website is www.mysilpada.com/april.carr
A Thirty-One bag was donated by Ami Sharp! Her website is www.mythirtyone.com/AmiSharp
Theresa Corbett Firth donated a Scentsy Plug In Warmer and two scents! Her website is www.tcfirth.scentsy.us/Scentsy/Home
Bobbi Connelly donated an Origami Owl Living Locket and two charms! Her website is www.bobbiconnelly.origamiowl.com
Salon Vivace Newport News donated a Rejuvenating Spa Pedicure! They have various locations, the Newport News location's phone # is 757.873.1775 All of their locations in several states along with their services are available on their website www.salonvivace.com
Shear Genius Salon in Williamsburg donated a Gift Certificate for a haircut along with a goody bag with some product inside! Their phone # is 757.220.5722 (Ask for Jessica!) Their website is www.sheargeniussalon.com
One of the most amazing and heartfelt items that we were able to raffle came all the way from Texas!!! Maddox reached Texas!! Kirsten was tweeting about making her raffle baskets and coming down for the benefit and one of her wonderful friends on Twitter offered to send a handmade crocheted blanket!! Kirsten asked if I'd be interested and I said I would never turn down a donation AND I was AMAZED and so touched by the generosity of a stranger! So, Anne quickly mailed a beautiful blanket to Kirsten that just so happened to be close in colors to the theme of the event! This whole offer and transaction all happened just in the week prior to the event. I was beyond amazed and Kirsten and I were so proud that Maddox had reached as far as Texas! Thank you Anne Mashek! If you are looking for some beautiful crocheted items, check out Anne's Etsy shop at www.AnneMashekCreations.Etsy.com
Last, but DEFINITELY not least, I am thankful to Teresa Rhyne who donated an autographed and pawtograghed copy of her book, The Dog Lived (And So Will I) You can read about her and Seamus, buy the book, and read her blog at www.teresarhyne.com I HIGHLY recommend that you AT LEAST check out her website and then hopefully her book! I loved it! And how awesome was it for her to send an autographed and pawtographed copy for Maddox's Miles For Spina Bifida?!? Her donation was the first or second I secured and I was thrilled! It made me know that what I was doing was really happening and that I was making it happen!
Friday, June 7, 2013
Monday, May 13, 2013
Maddox's Miles for Spina Bifida -- ALL The Details Of The 2K
Mackenzie and I will be holding our FIRST Annual Maddox's Miles For Spina Bifida! All The Details Are To Follow:
***There are more blog posts to come, I just needed to get registration going! But, I will keep blogging and bring you up to date and plan to keep it going! Check below this post though because I plan to keep this one at the top until after the event!***
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WHAT: Maddox's Miles For Spina Bifida is a 2K Run/Walk for Adults/Children to benefit Maddox's Spina Bifida related Needs
WHEN: May 18, 2013
We will start the event at 10:00. Adults will run/walk at 10:20. Children will run/walk at 10:45 or after all adults are finished, whichever is later.
(If Children want their parents to walk with them, I think at this point that'd be best done during the children's time, I may change that based on how many adults and children register. You can also email me if you think you would like to do a family walk or walk with your child and I may add another time slot.)
WHERE: Tabb High School Outdoor Track
4431 Big Bethel Road
Yorktown, VA 23693
COST: Adults will be $25 - You can select T-Shirt Size Below From Drop Down Menu At The Top Left...If registering for more than one, you will have to do the process of "adding to cart" X amount of times.
-- I do NOT think you can see PayPal buttons on mobile site!
Children will be $20 (13 and under) - You can select T-Shirt Size Below From Drop Down Menu At The Top Left...If registering for more than one, you will have to do the process of "adding to cart" X amount of times. -- I do NOT think you can see PayPal buttons on mobile site!
ONLINE REGISTRATION WILL END ON MAY 3rd (REGISTRATION CAN BE DONE ONLINE AFTER MAY 3rd, BUT JUST LIKE WALK UP, I CANNOT GAURANTEE SHIRTS DAY OF EVENT OR IN YOUR SIZE)-- I WILL HAVE WALK UP REGISTRATION AND WILL ONLY ACCEPT CASH OR CHECK, I CANNOT GAURANTEE SHIRTS DAY OF EVENT OR IN YOUR SIZE -- I AM ORDERING EXTRAS TO HAVE DAY OF AND ALREADY HAVE A 2nd ORDER PLACED FOR IF/WHEN I RUN OUT!
We will have an M.C. that will play music throughout. I am looking for face painters or someone who can do balloon animals or some sort of entertainment for the children. If you know anyone or are someone who would be willing to donate their time, please get them in contact with me. THANK YOU!
I'm also looking for any items to raffle such as gift cards to local restaurants if you work at one and can have them donated. If you represent a home party business and would like to donate an item or items to be raffled, you can put your business cards out along with catalogs out to try and generate business! I already have a representative from Silpada willing to donate and am only taking one from each company.THANK YOU!
DONATIONS can be made at the event or through PayPal At The Top Left! -- I do NOT think you can see PayPal buttons on mobile site!
***My friend (and travel agent) Mary Kraemer has offered to make a donation any and every time someone books a vacation with her and mentions "Maddox"!
It's a great way to have a wonderful vacation *and* do something great for Maddox! So, if you're already eyeing your next getaway, talk it over with Mary, she is GREAT! It'd be a WIN for her and for Maddox!
Mary's Facebook page is www.facebook.com/
It's a great way to have a wonderful vacation *and* do something great for Maddox! So, if you're already eyeing your next getaway, talk it over with Mary, she is GREAT! It'd be a WIN for her and for Maddox!
Mary's Facebook page is www.facebook.com/
If you are OUT OF STATE and would like to purchase T-Shirts to support Maddox, I am willing to ship! They will be $20 for Adults, $15 for Children and $5 flat rate shipping.
ALL BUTTONS ARE ON TOP LEFT!
Any questions, comments or suggestions, please feel free to email me at MaddoxsBlog@Gmail.com
WHY I decided to have a benefit for Maddox...
As soon as Maddox was born, I felt called to ACTION! I know a HUGE part of this is the distance between us and how helpless I feel from here, but before I left for my FIRST trip to CT, my wheels were spinning, I intended to do SOMETHING like this. My thoughts are...now and in the future, we really don't know what Maddox's needs will be. I, as Maddox's Aunt, do NOT ever want my baby to go without something because insurance doesn't cover it or whatever bullsh!t reason there may be that something he NEEDS cannot be provided. I KNOW that his parents will do EVERYTHING in their power to make sure he has the BEST care, BEST therapies, BEST of EVERYTHING, NO ONE will let Maddox go without, but again, we do not know what the future holds as Maddox is just a baby. Plus, there could be unexpected travel expenses for doctors, time off from work, etc...who knows. As this little baby's aunt (maybe his over bearing aunt), I want to make sure, just as his parents and the rest of his family and anyone who loves him does, that he always receives the best care, the care he needs, the care he deserves, and ANY and EVERYthing he may ever need. So, that is where this came from.
In addition to that, this blog and this work is a way to channel my heartache (due to missing him from distance) into positive action. When I work FOR Maddox, I miss him all the same, but it is channeled differently and instead of crying, I am positive and excited about the things I'm trying to do.
A HUGE part of this and maybe this should be higher up, but I just ramble...if you haven't noticed, is that I'd like to educate people about Spina Bifida. Most people weren't sure what it was when I told them what was happening. I'd like to share info and raise awareness for Spina Bifida with anyone who will read or listen. When I heard SPINA BIFIDA, there wasn't much out there besides the definitions of the three types, and I'll admit, I'd heard of it, but really didn't know anything about it. I'm learning as we all go! As a matter of fact, auto correct on my phone does NOT recognize Spina Bifida and as I type this, the spell check doesn't recognize it either. That bothers me and to me only proves the lack of information and awareness that I VERY quickly discovered.
Mack also wanted to help Maddox and other babies once she knew and understood the full scope of things...how could I NOT do that?!? I said I did, too! I hope to keep my fundraising efforts up and keep going and get bigger and bigger and help babies beyond Maddox.
Last, but not least, a dream of mine has always been to one day start a charity or non profit, I could never narrow down my cause, and there are SO many out there...I always felt overwhelmed and never knew where or how to start. Then, Maddox entered my life and gave me my reasons, push, and motivation, and may help me achieve my dream...I'd love for this to eventually be a charity in Maddox's name...one more gift that little miracle of a baby has GIVEN me. He has given me so much, I want to give back to him and hopefully one day give to others in honor of this AMAZING little guy who has pretty much changed my life.
That's my WHY!
In addition to that, this blog and this work is a way to channel my heartache (due to missing him from distance) into positive action. When I work FOR Maddox, I miss him all the same, but it is channeled differently and instead of crying, I am positive and excited about the things I'm trying to do.
A HUGE part of this and maybe this should be higher up, but I just ramble...if you haven't noticed, is that I'd like to educate people about Spina Bifida. Most people weren't sure what it was when I told them what was happening. I'd like to share info and raise awareness for Spina Bifida with anyone who will read or listen. When I heard SPINA BIFIDA, there wasn't much out there besides the definitions of the three types, and I'll admit, I'd heard of it, but really didn't know anything about it. I'm learning as we all go! As a matter of fact, auto correct on my phone does NOT recognize Spina Bifida and as I type this, the spell check doesn't recognize it either. That bothers me and to me only proves the lack of information and awareness that I VERY quickly discovered.
Mack also wanted to help Maddox and other babies once she knew and understood the full scope of things...how could I NOT do that?!? I said I did, too! I hope to keep my fundraising efforts up and keep going and get bigger and bigger and help babies beyond Maddox.
Last, but not least, a dream of mine has always been to one day start a charity or non profit, I could never narrow down my cause, and there are SO many out there...I always felt overwhelmed and never knew where or how to start. Then, Maddox entered my life and gave me my reasons, push, and motivation, and may help me achieve my dream...I'd love for this to eventually be a charity in Maddox's name...one more gift that little miracle of a baby has GIVEN me. He has given me so much, I want to give back to him and hopefully one day give to others in honor of this AMAZING little guy who has pretty much changed my life.
That's my WHY!
A Quick THANK YOU!
I just wanted to give a quick thank you to:
Everyone who has read the blog
Shared the Blog
Registered for the event
Donated money, items, or time to the event
Supported me in making this dream a reality
Everyone who has sent me some type of message, whether it's a text, email or Facebook message - they make me realize that what I set out to do is what is happening and they have touched my heart and soul and keep me going - If I could ask ONE thing, I'd LOVE if people left their comments on the blog so that Maddox's parents, Brandon and Kelly, could read the comments.
I cannot wait for what will probably be my next post...my AFTER the event post to share all about the event and give credit where credit is due!
Sunday, May 12, 2013
A Mother's Day post about Maddox's AMAZING Mom, Kelly!
I don't even know where to begin, because there are SO many good things to say about Kelly, but I feel a very strong need to dedicate a post to her right now! Obviously I mention her a lot, she is Maddox's AMAZING Mom and a huge part of his story. Since I've met her, which wasn't so long ago, I knew she was a great person. Seeing her as a Mom to the amazing blessing that Maddox has been leaves me almost speechless. I don't know how to describe her to people other than amazing...I need a thesaurus. My heart is so full of love for this new member of my family that I could not be more proud to call my sister in law. Beyond the Mom she is, I think of how lucky I am that she and I are able to hit it off and communicate one on one and that I am able to hear about Maddox through her and get pics from her. If I could choose, I'd rather have her be a great Mom and a horrible sister in law, but to get BOTH, I'm lucky! She works so hard on a daily basis with that AMAZING baby that Maddox is in an effort to teach him everything other babies can do, if only in a different way. I believe that between Kelly's efforts and love and what I saw in Maddox's face the first time I held him in the NICU, that I find it hard to believe that Maddox will not walk ONE day! But, if he doesn't, that's okay, too.
The last post was rather grim, but since then, well right after, Kelly worked on teaching him to roll over on an incline and was quickly SUCCESSFUL (HUGE round of applause, PLEASE!!!)!!! There is a video of him rolling over, which I loooove on Facebook, but I can't figure out how to get it here...sorry.
So, in closing, thank you Kelly for being a friend, a wonderful sister in law, a loving aunt, Maddox's AMAZING Mom, a wonderful soul mate to Brandon, and a much loved daughter in law to my Dad and Jane! We all love you sooo much! I'm so happy that you had a wonderful Mother's Day with your boys! You deserve it! Xoxo
The last post was rather grim, but since then, well right after, Kelly worked on teaching him to roll over on an incline and was quickly SUCCESSFUL (HUGE round of applause, PLEASE!!!)!!! There is a video of him rolling over, which I loooove on Facebook, but I can't figure out how to get it here...sorry.
So, in closing, thank you Kelly for being a friend, a wonderful sister in law, a loving aunt, Maddox's AMAZING Mom, a wonderful soul mate to Brandon, and a much loved daughter in law to my Dad and Jane! We all love you sooo much! I'm so happy that you had a wonderful Mother's Day with your boys! You deserve it! Xoxo
Beautiful as a Mother
Maddox and Mommy
This one has to be one of my FAVES...Look at BOTH of their HAPPY faces! <3
Saturday, May 11, 2013
Some Maddox Pictures
Now that Maddox can sit up, he doesn't want to relax and lean back in his swing! -- How cute is my tiny guy?!?
Take 2 -- So tiny and look at all that hair!
Maddox in his splints. Mack says, "He is laughing in his doctors faces and saying, 'Look at me, I'm going to walk one day!!'" -- I have to agree!
Twinsies!
King of The Jungle! -- This was Maddox's new toy and he ABSOLUTELY loved it from what I heard!
Daddy and Maddox
Maddox and Daddy -- I love this!
Maddox using his Daddy as a recliner! Daddy must be comfy!
Tuesday, April 23, 2013
Maddox just turned FOUR months and we have a few updates!
I'm going to start with the fun stuff because I want to!
Here are some pictures of my little guy that make me oh, so PROUD!!!
Deep in thought in his FANCY Easter clothes!
"Chicks Dig Scars"
Enjoying the outdoors and showing off his sitting up skills at ALMOST FOUR months!!!
"Mom, I really DO like it out here!"
"I rock four months like no other!"
Now, onto some medical updates...
Maddox had an appointment at the Spina Bifida clinic at Yale on April 12. Those appointments are always a little rough on Kelly because they are LONG and the doctors do not sugarcoat anything. In turn, they are also hard to hear/read about. Kelly said, they are now referring to our baby as a paraplegic. I know most of you are thinking isn't that what paralyzed from the waist down means anyway?!? I think for us, I know for myself, words break my heart. Especially when it comes to such a sensitive topic like my little guy. I had a hard time with disability and still don't think I want to use that. Paralyzed straight up BROKE my heart, and it's kind of like paraplegic is stepping it up a notch when it comes to worse words to use when describing someone and in turn those words just HURT. Then they reiterate that he will never walk or have any movement or function, etc. It's hurtful and depressing although we all know. But, we still do NOT lose HOPE and NEVER WILL! Then, they talk about getting splints on Maddox to straighten his legs SOON, standers that will keep him in a standing position by 9 months so that his muscles, tissues and bones do not become weak and fragile in the future so that maybe he can use assistive devices. I TRIED to hang on to this! If they're doing things like this, sounds to me like they are preparing his body to be able to WALK one day with assistive devices! I believe he will regardless of all the depressing stuff they say. They also said that he would probably get his first wheelchair by the time he is 12 months!!! Kelly and I went back and forth through text with the info, I asked how she felt, told her what I took from it and how I felt and I asked about the rest of Maddox's day. I tried to take all of this news and pull from it that Maddox WILL walk one day with the use of assistive devices. But, eventually my heart overtook my mind and I had my little meltdown over stupid words. I cried about the words used in reference to my nephew. Again, I know what his future may and/or probably hold, but words do hurt. That rhyme we said in school about sticks and stones can break my bones, but words can never hurt me is NOT true (but, I won't tell Mack...I don't even know if they say that anymore...maybe I should bring it back!). Anyway, on the rare occasion, no matter how strong and tough you are, words can hurt. I told Kelly words are so heartbreaking, but nothing about Maddox is...he's perfect! Then, I was left pondering again why I cry and this time I thought maybe it's because I NEVER want Maddox to be sad. I know Maddox will never know any different and I know he is surrounded by LOVE and SMILES and FAMILY, but when he is older, I never want him to be sad about the situation he is in or feel sorry for himself because that would REALLY break my heart...maybe that's why I cry...or maybe it's one of the reasons. When I write, I relive my feelings, so it's hard writing weeks and sometimes months later because I get upset all over again, then I think of how strong my brother and Kelly are! I think of them everyday and how perfect they were for Maddox! As I'm thinking of it NOW, I had to share it while the thought iwas passing! I'm also constantly thankful that Kelly is someone that I am able to count as a friend and part of my family! I can't imagine if I couldn't just text her anytime I wanted with a question or a story and if I didn't get a random texts with a pictures! As an aunt that lives far away, I've got it good! :-)
On April 15, Maddox and Kelly went back up to Yale for an appointment with Genetics to follow up with his chromosomal defect - the deletion of part of chromosome number 2. They now believe that because of his cleft palette, two different colors in each eyes, deformation in his skull, the hydrocephalus he had, the wide space between his eyes, and his kidney problems that he may have Wahlberg's Syndrome as well. The things I just listed are common symptoms. Again, it is something that is so rare that they do not yet know what this could mean for Maddox's future. They will just monitor him as he grows. They did say, however, that Maddox was doing EXTREMELY well and that they are VERY happy that he is hitting his developmental milestones!!! I chose to cheer on the last sentence mostly in response when Kelly shared the news because I am so PROUD of my guy and his AMAZING parents and how much they work with him so that he can be the smarty pants that he is!!! They are also testing Kelly and Brandon to make sure for future children that this isn't a gene they carry, they said it's 99% likely that they do not carry it. Kelly also said that she had "googled" Wahlberg's Syndrome and in some cases there can be severe intellectual disabilities, but so far that doesn't seem to be an issue for Maddox. I admitted that I was afraid to google and that I HAD thought about it, but didn't do it. Kelly admitted that googling was pretty scary and to remember that there were different degrees to how it can affect someone and that Maddox may only have some symptoms and not others. I decided to stick with what I've done most of the time and learn through and with Kelly and Maddox and stay away from google so that I didn't get myself worked up about something that may never be an issue for Maddox.
Then, yesterday, April 22nd Kelly and Maddox headed back to Yale yet again. Yale loves them this month. Yesterday's appointment was to have Maddox's kidneys checked.. he had an ultrasound done and there is still some fluid on his kidneys, but it does not seem to be getting worse. They will continue to monitor that for now.
Maddox had an appointment at the Spina Bifida clinic at Yale on April 12. Those appointments are always a little rough on Kelly because they are LONG and the doctors do not sugarcoat anything. In turn, they are also hard to hear/read about. Kelly said, they are now referring to our baby as a paraplegic. I know most of you are thinking isn't that what paralyzed from the waist down means anyway?!? I think for us, I know for myself, words break my heart. Especially when it comes to such a sensitive topic like my little guy. I had a hard time with disability and still don't think I want to use that. Paralyzed straight up BROKE my heart, and it's kind of like paraplegic is stepping it up a notch when it comes to worse words to use when describing someone and in turn those words just HURT. Then they reiterate that he will never walk or have any movement or function, etc. It's hurtful and depressing although we all know. But, we still do NOT lose HOPE and NEVER WILL! Then, they talk about getting splints on Maddox to straighten his legs SOON, standers that will keep him in a standing position by 9 months so that his muscles, tissues and bones do not become weak and fragile in the future so that maybe he can use assistive devices. I TRIED to hang on to this! If they're doing things like this, sounds to me like they are preparing his body to be able to WALK one day with assistive devices! I believe he will regardless of all the depressing stuff they say. They also said that he would probably get his first wheelchair by the time he is 12 months!!! Kelly and I went back and forth through text with the info, I asked how she felt, told her what I took from it and how I felt and I asked about the rest of Maddox's day. I tried to take all of this news and pull from it that Maddox WILL walk one day with the use of assistive devices. But, eventually my heart overtook my mind and I had my little meltdown over stupid words. I cried about the words used in reference to my nephew. Again, I know what his future may and/or probably hold, but words do hurt. That rhyme we said in school about sticks and stones can break my bones, but words can never hurt me is NOT true (but, I won't tell Mack...I don't even know if they say that anymore...maybe I should bring it back!). Anyway, on the rare occasion, no matter how strong and tough you are, words can hurt. I told Kelly words are so heartbreaking, but nothing about Maddox is...he's perfect! Then, I was left pondering again why I cry and this time I thought maybe it's because I NEVER want Maddox to be sad. I know Maddox will never know any different and I know he is surrounded by LOVE and SMILES and FAMILY, but when he is older, I never want him to be sad about the situation he is in or feel sorry for himself because that would REALLY break my heart...maybe that's why I cry...or maybe it's one of the reasons. When I write, I relive my feelings, so it's hard writing weeks and sometimes months later because I get upset all over again, then I think of how strong my brother and Kelly are! I think of them everyday and how perfect they were for Maddox! As I'm thinking of it NOW, I had to share it while the thought iwas passing! I'm also constantly thankful that Kelly is someone that I am able to count as a friend and part of my family! I can't imagine if I couldn't just text her anytime I wanted with a question or a story and if I didn't get a random texts with a pictures! As an aunt that lives far away, I've got it good! :-)
On April 15, Maddox and Kelly went back up to Yale for an appointment with Genetics to follow up with his chromosomal defect - the deletion of part of chromosome number 2. They now believe that because of his cleft palette, two different colors in each eyes, deformation in his skull, the hydrocephalus he had, the wide space between his eyes, and his kidney problems that he may have Wahlberg's Syndrome as well. The things I just listed are common symptoms. Again, it is something that is so rare that they do not yet know what this could mean for Maddox's future. They will just monitor him as he grows. They did say, however, that Maddox was doing EXTREMELY well and that they are VERY happy that he is hitting his developmental milestones!!! I chose to cheer on the last sentence mostly in response when Kelly shared the news because I am so PROUD of my guy and his AMAZING parents and how much they work with him so that he can be the smarty pants that he is!!! They are also testing Kelly and Brandon to make sure for future children that this isn't a gene they carry, they said it's 99% likely that they do not carry it. Kelly also said that she had "googled" Wahlberg's Syndrome and in some cases there can be severe intellectual disabilities, but so far that doesn't seem to be an issue for Maddox. I admitted that I was afraid to google and that I HAD thought about it, but didn't do it. Kelly admitted that googling was pretty scary and to remember that there were different degrees to how it can affect someone and that Maddox may only have some symptoms and not others. I decided to stick with what I've done most of the time and learn through and with Kelly and Maddox and stay away from google so that I didn't get myself worked up about something that may never be an issue for Maddox.
Then, yesterday, April 22nd Kelly and Maddox headed back to Yale yet again. Yale loves them this month. Yesterday's appointment was to have Maddox's kidneys checked.. he had an ultrasound done and there is still some fluid on his kidneys, but it does not seem to be getting worse. They will continue to monitor that for now.
After all those appointments and all that updating, Maddox is a very sleepy boy!
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