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/amazingvacationsbymarykraemer , her website is VacationsByMary.com, and her email is MaryK@CruisingCo.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!
Sunday, April 7, 2013
Where I (Aunt Meisha) am Today...
I just returned from a little vacation and I stopped and visited two of my sweetest best friends on the way to my vacation destination. When I visited each of them, Kristine and Katie, one of the first topics of conversations was Maddox. Let me explain a little...we are the type of friends who don't have to speak everyday, but when we are together we are as comfortable as people can be and pick up on whatever is going on in our lives. Kristine has a 4 year old little girl and is pregnant with her next little girl and Katie has a 2 year old little boy and just had a baby girl. I went to SEE them and CATCH up on them and their kiddos.
I stayed one night with each friend, Kristine being first, for Maddox to be an early topic of conversation with each FRIEND meant the WORLD to me! Although they both knew bits and pieces, we basically started at the beginning each time and paused when they had questions. It always led up to if he had any movement in his legs. I said no, he doesn't he is paralyzed from the waist down. I probably said it rather bluntly. Using the word paralyzed is new for me. I had seen it being used more frequently in Kelly's posts on Facebook and maybe in the email she sent me and the doctors use it. After I said the word paralyzed so bluntly and got "THE LOOK" from each FRIEND, "the look" is a combination of sorrow, pain, shock, many things, general not knowing what to say or do next...I explained that previously I'd always said that at this point he hadn't had any movement from the waist down so far. When I heard/read the word paralyzed, I had a good, hard meltdown...the WORD hit me hard in my heart, it physically hurt my heart, the word paralyzed sounds so permanent and confining. I have no problem with the fact that my nephew will probably be in a wheelchair, but I still hold out hope that he will not need it all the time and will not be confined to it, we all still hold out hope that he will walk one day with any aids he needs...we will NEVER let go of HOPE, so the word paralyzed, kind of like the word disability wasn't a word I'd been using YET or ready to face. Once I accepted the word (I think), I started using the word more freely and probably giving other people a very tiny percentage of the feeling and shock I felt when I had my meltdown, I'd say less than a 5% reaction to what I had. I took it hard.
What NO ONE understands and why I think any of this is a big deal anyway is how this wasn't found before Maddox was delivered. The Spina Bifida itself isn't a big deal to any of us, I guess it was the SURPRISE and we are still processing and learning about it, I suppose. Kristine was explaining her prenatal care as she had some high risk issues with both pregnancies, I was fortunate enough to be there for an ultrasound during her first pregnancy with Zoey! The things she was explaining either didn't exist when I was pregnant OVER ten years ago, weren't available where I was, or weren't routine in normal pregnancies. I know it's been a while, but I will always claim to be knowledgeable when it comes to pregnancy and babies and my friend was using terms I had never heard of as far as what she made it sound like was normal prenatal care. Hmmm. Well, the next day, I'd be speaking with a recent preggo who only lived about 30 miles away so if it came up, I could compare notes on what is and isn't normal prenatal care, I suppose.
When I got to Katie's and the topic of babies in general came up...her recent delivery, how Kristine is doing, how my Maddox is doing, I learned that for a lack of a better way to put it, that after Maddox was born since Katie was already far along in her pregnancy, she started to do interrogation sessions at her prenatal appoinments as to how Spina Bifida could've gone undetected. I laughed a little knowing Katie and picturing this, then I took it to heart that Katie who'd never met them did something that meant a lot to me. The overall gist that I got was that the South tends to have more high tech prenatal equipment than the North, which surprised me, but I believed it because of the equipment I'd seen at work at Kristine's appointments. Maddox being at Yale up North was one thing, but as far as prenatal care, my friends weren't going to any SPECIAL care, this was just the care they received. Detailed anatomy of the baby down to knowing how many veins and arteries there are in the umbilical cord?!?! That seemed CRAZY to me, but again, it'd been over TEN years for ME!
So, I am at a place of not understanding how you can see something that sounds as small as veins and arteries, but not something as big as a hole in a baby's back? I'm glad for my babies that I love not born yet that technology develops all the time and hopefully anything that needs detected can and will be, I will never understand how Maddox's Spina Bifida wasn't detected. Although detecting it wouldn't have changed things, I just won't understand. Actually, "the look" I get when people hear his story and realize this went undetected is VERY similar to "the look" I'm getting when I bluntly say that he is paralyzed from the waist down. Although, I go through a range of emotions and feelings in the journey I've been on since that beautiful boy was born, one emotion and feeling that has never changed is my unconditional love for him, maybe it changes because I think it grows with him! I still cry on occasion when I get deep into the story or thought or there's a new term, but I'm never sure why. I refuse to feel bad for Maddox. He has a great life with great parents and I don't ever want him to be someone people feel bad for, so I'm not sure why I cry, but sometimes I still do. Maybe out of my deep love and concern for him and his future and my desire to always be a caretaker and protector of those that I love.
Thursday, March 21, 2013
Maddox at THREE Months...
In case you haven't realized, I just love my little guy, so here are a few pics...
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Maddox at 12 weeks in an outfit from ME!!!
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Maddox looking like he's laughing at his own little inside joke! I love love love this one!
This isn't actually taken today, but we will use it as his THREE month SUPER Baby picture!
***Posts are written chronologically, but delayed, so Maddox turned THREE months as I was writing, that's why it may seem out of order.***
Wednesday, March 20, 2013
Keeping Mack in or maybe on the edge of the Maddox loop...
Mack is ONLY ten, but she is a very mature ten, but still a ten year old little girl. I've always talked to her truthfully and as an adult, but also try and remember she's a kid. When it came to Maddox, I wasn't sure exactly how to approach everything. This was her new baby cousin she was SO excited for...UNCLE BRANDON'S BABY! She LOOOOVES her Uncle Brandon. I didn't want her to be too sad, scared, I don't know what. Sometimes I may underestimate her. She has been through some pretty heavy things for a ten year old.
Anyway, like I said previously, in the beginning I said that there was something wrong with Maddox's back and that he had to have surgery and left it at that. From her reaction and the way she told other people, it seemed clear that she thought just that was pretty serious. While I was gone, I updated her on Maddox when I visited him and sent pictures. When I came home, I told her all about my trip and showed her even more pictures. Things seemed positive to me so they probably sounded positive to her.
As I received news and updates, I shared the news (not all of it) with Bill in front of Mack. More so she would overhear instead of telling her directly so she was always on the edge of the loop. As grown up as she is, this was such new territory that I wasn't sure how to handle it. Maybe it was me, maybe I wasn't ready to handle it with her, as much as I thought I was. I think mostly I didn't know how she would handle it and in some way, I was trying to protect her and I didn't want her feelings for Maddox to change. I don't know why I would ever think that would happen. I know better. She truly is a miniature version of me. You'll see later how she fully handled it.
As the trip got closer, I knew I needed to break the news to her that Maddox's legs didn't have any movement. I had anxiety over how/when to do this. I finally did it one night while we sat on my bed. She accepted it and didn't say much I'm sure that after I said it that I spun out some great things about Maddox just as I had when I had told her about the shunt. Yes, he'd had a surgery where a tube went from his brain to his belly, but he is doing AMAZING and is more alert with his Mom and Dad!!! What concerned me about Mack knowing things was that she wasn't asking questions. She generally accepted what I'd told her and that was that. THAT was unusual for MY child! That's what concerned me a little and made me wonder what she was really thinking and feeling about Maddox. I never wanted to question and push though. If she was fine, I wasn't trying to make her think and feel things she wasn't.
I NEVER used the word Spina Bifida in front of her because I didn't want her to google it and read any information that I wasn't prepared for her to have or know. I also DEFINITELY never used the word disabled. Beyond the first or second day that Maddox was born and I was in that initial shock and panic, I never even thought of him as disabled, so it was definitely never a word that came out of my mouth after those days. I don't know if I am in denial, but it isn't a word that I choose to associate with Maddox. I suppose I don't like the connotation that goes along with it. I believe Maddox is a MIRACLE baby and we all believe he is destined for greatness. Yes, he may use a wheelchair one day, but so what? Maybe I should look up the definition of the word. But, since this is MY blog about Maddox, for the time being, you won't be seeing/hearing me calling him disabled. So, those were words Mack never heard.
She knew what she knew, she may have inferred other things, but she was just as excited as I expected her to be to go to CT and meet and love on Baby Maddox!
Anyway, like I said previously, in the beginning I said that there was something wrong with Maddox's back and that he had to have surgery and left it at that. From her reaction and the way she told other people, it seemed clear that she thought just that was pretty serious. While I was gone, I updated her on Maddox when I visited him and sent pictures. When I came home, I told her all about my trip and showed her even more pictures. Things seemed positive to me so they probably sounded positive to her.
As I received news and updates, I shared the news (not all of it) with Bill in front of Mack. More so she would overhear instead of telling her directly so she was always on the edge of the loop. As grown up as she is, this was such new territory that I wasn't sure how to handle it. Maybe it was me, maybe I wasn't ready to handle it with her, as much as I thought I was. I think mostly I didn't know how she would handle it and in some way, I was trying to protect her and I didn't want her feelings for Maddox to change. I don't know why I would ever think that would happen. I know better. She truly is a miniature version of me. You'll see later how she fully handled it.
As the trip got closer, I knew I needed to break the news to her that Maddox's legs didn't have any movement. I had anxiety over how/when to do this. I finally did it one night while we sat on my bed. She accepted it and didn't say much I'm sure that after I said it that I spun out some great things about Maddox just as I had when I had told her about the shunt. Yes, he'd had a surgery where a tube went from his brain to his belly, but he is doing AMAZING and is more alert with his Mom and Dad!!! What concerned me about Mack knowing things was that she wasn't asking questions. She generally accepted what I'd told her and that was that. THAT was unusual for MY child! That's what concerned me a little and made me wonder what she was really thinking and feeling about Maddox. I never wanted to question and push though. If she was fine, I wasn't trying to make her think and feel things she wasn't.
I NEVER used the word Spina Bifida in front of her because I didn't want her to google it and read any information that I wasn't prepared for her to have or know. I also DEFINITELY never used the word disabled. Beyond the first or second day that Maddox was born and I was in that initial shock and panic, I never even thought of him as disabled, so it was definitely never a word that came out of my mouth after those days. I don't know if I am in denial, but it isn't a word that I choose to associate with Maddox. I suppose I don't like the connotation that goes along with it. I believe Maddox is a MIRACLE baby and we all believe he is destined for greatness. Yes, he may use a wheelchair one day, but so what? Maybe I should look up the definition of the word. But, since this is MY blog about Maddox, for the time being, you won't be seeing/hearing me calling him disabled. So, those were words Mack never heard.
She knew what she knew, she may have inferred other things, but she was just as excited as I expected her to be to go to CT and meet and love on Baby Maddox!
Monday, March 18, 2013
In Between, Details, and Definitions...
This post may be a bit all over the place. These are bits I left out of other posts, definitions, clarifications, and things that happened between my two visits.
In Quotes and Italics are Kelly's words:
"Along with the Spina Bifida, Maddox was born with a soft cleft palate in the roof of his mouth, a severely clubbed right foot, and a chromosomal defect (a large deletion of chromosome 2), paralysis of his lower extremities apart from the belly button and below. It is not believed that he will have any control over his bladder or bowels at this time. The chromosomal defect is so rare that there are only 10 reported cases in the United States and none of them have the same symptoms. We were told that there is a 100% chance that he will have some sort of developmental delay, but to what severity is unknown. They will be following him as a case study to see what happens.
Immediately after his surgery, the focus was on wound care and trying to get him to heal up. The neurosurgeon thought that his incision was so large that he may have needed a skin graft. A skin graft was a huge factor with how long he would remain in the hospital. Luckily Maddox was such a great healer, that this was not the case. His incision however was leaking spinal fluid. He also had hydrocephalus (fluid pooling in his brain causing pressure). On January 9th, a VP shunt was placed through his brain running down his neck and chest and into his belly. The purpose of this shunt was to relieve the pressure of the fluid from his brain, and to prevent it from leaking from his incision. This surgery proved to be very beneficial to Maddox. Prior to the shunt, he was lethargic, sleeping the majority of the day and not being very responsive to stimulation. He was a whole new baby after the surgery, much more alert and aware when his parents and nurses were around. His incision started healing much better once the fluid stopped leaking.
For the first two or three weeks, Maddox received all of his nutrition from a nasal gastric feeding tube. This tube went in through his nose and down into his stomach. On January 7th, the doctors gave the ok to try and give him a bottle. Due to his cleft palate, he needed a special feeding bottle with a haberman nipple. This soft tipped bottle, allowed the person feeding him to "squirt" the milk into his bottle and not have to have him worry about sucking. After a very scary go about with this, and him choking a few times, they felt he did well enough that he could continue to practice. If he wasn't able to master this, there was talk of him having to come home on a feeding tube."
The below information is from The Mayo Clinic website to help explain Spina Bifida to you:
Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that enclose them.
Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone.
There are three types of Spina Bifida, the most severe being Myelomeningocele, which is the type that Maddox has.
Also known as open spina bifida, myelomeningocele is the most severe form — and the form people usually mean when they use the term "spina bifida."
In myelomeningocele, the baby's spinal canal remains open along several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back. In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed, making the baby prone to life-threatening infections.
Neurological impairment is common, including:
Doctors aren't certain what causes spina bifida. As with many other problems, it appears to result from a combination of genetic and environmental risk factors, such as a family history of neural tube defects and folic acid deficiency.
There are risk factors, but that is more detailed and I am not going to go that far, again this information came from The Mayo Clinic's page on Spina Bifida. They do say: "Most babies with spina bifida are born to parents with no known family history of the condition."
You MAY see the commercials on TV relating birth defects such as Spina Bifida to prescription medications, that can be the case (Medications are a risk factor), but was not the case for Kelly and Maddox.
Again according to The Mayo Clinic Website there are a "Range of Complications", since we are all only a few months in and generally do NOT use the internet to learn about or diagnose Maddox, I am only going to share the ones that have affected Maddox thus far. Early into this journey that we are all on I learned not to google much (plus there's not all that much info out there) becuase I didn't want to learn about Spina Bifida online, but through Maddox and WITH Kelly and Brandon. On my second trip to CT, I told Kelly that I don't look things up often (every now and then for reference/definition maybe) and that I would NEVER try and guide her or make suggestions when it came to Spina Bifida, but that I WOULD share with her ALL of my BABY knowledge because I KNOW babies and that she could choose to listen to what she wanted and disregard the rest. That's why I do not want to spew the entire internet at you in my blog...if you want to google, by all means, google. Anyway, back to the "Range of Complications" Maddox has and/or will/may be affected by according to what has happened and been said so far.
When I got the first bottle feeding news from Kelly on January 7th, I was ECSTATIC!!! I felt like that was a HUGE step and if they were talking bottle feeding in order to get him ready to go home, then it was REALLY HUGE!
When I would check in, sometimes I would specifically ask about THE shunt, is it looking like it's needed, have they said anymore? Things were looking good, then one day I checked in with Brandon, obviously January 9th, probably asking how the bottle feeding went and received a text back saying that he'd just had the shunt put in and that the surgery went great, so on and so forth. WHAT?!?! Why am I finding out NOW?!? Well, then again, the importatnt part is that it went WELL! Then, after I could process what I read and breathe, I was actually relieved to not know until it was over so that I didn't have time to worry, panic, stress, cry, etc. The scary part was over without me ever being the wiser! So that was THAT! TWO surgeries down! Maddox is a BAD @SS!! A few days later bottle feedings were resumed as long as incisions were cooperating! I was excited that on my next visit when I talked to my little Baby Love that he would be able to look up at me and I could use my animated face and voice that I use with babies! I couldn't wait to have a face to face conversation with Maddox! It may sound like a small thing to some, but I was excited! Last time, all of the things I said were whispered, and I'm sure I might whisper things again because I know Maddox can keep a secret, but I was excited to see his little face while I told him all the things I had to tell him...I couldn't wait!
Maddox on his BACK!! He wasn't able to be on his back due to his wound, but after having his shunt he HAD to spend some time on his back so that his shunt wounds could heal! It was a welcome sight to see him like this! I said he was probably more alert because he liked his new view, better than staring at a mattress!
In Quotes and Italics are Kelly's words:
"Along with the Spina Bifida, Maddox was born with a soft cleft palate in the roof of his mouth, a severely clubbed right foot, and a chromosomal defect (a large deletion of chromosome 2), paralysis of his lower extremities apart from the belly button and below. It is not believed that he will have any control over his bladder or bowels at this time. The chromosomal defect is so rare that there are only 10 reported cases in the United States and none of them have the same symptoms. We were told that there is a 100% chance that he will have some sort of developmental delay, but to what severity is unknown. They will be following him as a case study to see what happens.
Immediately after his surgery, the focus was on wound care and trying to get him to heal up. The neurosurgeon thought that his incision was so large that he may have needed a skin graft. A skin graft was a huge factor with how long he would remain in the hospital. Luckily Maddox was such a great healer, that this was not the case. His incision however was leaking spinal fluid. He also had hydrocephalus (fluid pooling in his brain causing pressure). On January 9th, a VP shunt was placed through his brain running down his neck and chest and into his belly. The purpose of this shunt was to relieve the pressure of the fluid from his brain, and to prevent it from leaking from his incision. This surgery proved to be very beneficial to Maddox. Prior to the shunt, he was lethargic, sleeping the majority of the day and not being very responsive to stimulation. He was a whole new baby after the surgery, much more alert and aware when his parents and nurses were around. His incision started healing much better once the fluid stopped leaking.
For the first two or three weeks, Maddox received all of his nutrition from a nasal gastric feeding tube. This tube went in through his nose and down into his stomach. On January 7th, the doctors gave the ok to try and give him a bottle. Due to his cleft palate, he needed a special feeding bottle with a haberman nipple. This soft tipped bottle, allowed the person feeding him to "squirt" the milk into his bottle and not have to have him worry about sucking. After a very scary go about with this, and him choking a few times, they felt he did well enough that he could continue to practice. If he wasn't able to master this, there was talk of him having to come home on a feeding tube."
The below information is from The Mayo Clinic website to help explain Spina Bifida to you:
Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that enclose them.
Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone.
There are three types of Spina Bifida, the most severe being Myelomeningocele, which is the type that Maddox has.
Also known as open spina bifida, myelomeningocele is the most severe form — and the form people usually mean when they use the term "spina bifida."
In myelomeningocele, the baby's spinal canal remains open along several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back. In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed, making the baby prone to life-threatening infections.
Neurological impairment is common, including:
- Muscle weakness, sometimes involving paralysis
- Bowel and bladder problems
- Seizures, especially if the child requires a shunt
- Orthopedic problems — such as deformed feet, uneven hips and a curved spine (scoliosis)
Doctors aren't certain what causes spina bifida. As with many other problems, it appears to result from a combination of genetic and environmental risk factors, such as a family history of neural tube defects and folic acid deficiency.
There are risk factors, but that is more detailed and I am not going to go that far, again this information came from The Mayo Clinic's page on Spina Bifida. They do say: "Most babies with spina bifida are born to parents with no known family history of the condition."
You MAY see the commercials on TV relating birth defects such as Spina Bifida to prescription medications, that can be the case (Medications are a risk factor), but was not the case for Kelly and Maddox.
Again according to The Mayo Clinic Website there are a "Range of Complications", since we are all only a few months in and generally do NOT use the internet to learn about or diagnose Maddox, I am only going to share the ones that have affected Maddox thus far. Early into this journey that we are all on I learned not to google much (plus there's not all that much info out there) becuase I didn't want to learn about Spina Bifida online, but through Maddox and WITH Kelly and Brandon. On my second trip to CT, I told Kelly that I don't look things up often (every now and then for reference/definition maybe) and that I would NEVER try and guide her or make suggestions when it came to Spina Bifida, but that I WOULD share with her ALL of my BABY knowledge because I KNOW babies and that she could choose to listen to what she wanted and disregard the rest. That's why I do not want to spew the entire internet at you in my blog...if you want to google, by all means, google. Anyway, back to the "Range of Complications" Maddox has and/or will/may be affected by according to what has happened and been said so far.
- Physical and neurological problems. This may include lack of normal bowel and bladder control and partial or complete paralysis of the legs. Children and adults with this form of spina bifida might need crutches, braces or wheelchairs to help them get around, depending on the size of the opening in the spine and the care received after birth.
- Accumulation of fluid in the brain (hydrocephalus). Babies born with myelomeningocele also commonly experience accumulation of fluid in the brain, a condition known as hydrocephalus. Most babies with myelomeningocele will need a ventricular shunt — a surgically placed tube that allows fluid in the brain to drain as needed into the abdomen. This tube might be placed just after birth, during the surgery to close the sac on the lower back, or later as fluid accumulates.
When I got the first bottle feeding news from Kelly on January 7th, I was ECSTATIC!!! I felt like that was a HUGE step and if they were talking bottle feeding in order to get him ready to go home, then it was REALLY HUGE!
When I would check in, sometimes I would specifically ask about THE shunt, is it looking like it's needed, have they said anymore? Things were looking good, then one day I checked in with Brandon, obviously January 9th, probably asking how the bottle feeding went and received a text back saying that he'd just had the shunt put in and that the surgery went great, so on and so forth. WHAT?!?! Why am I finding out NOW?!? Well, then again, the importatnt part is that it went WELL! Then, after I could process what I read and breathe, I was actually relieved to not know until it was over so that I didn't have time to worry, panic, stress, cry, etc. The scary part was over without me ever being the wiser! So that was THAT! TWO surgeries down! Maddox is a BAD @SS!! A few days later bottle feedings were resumed as long as incisions were cooperating! I was excited that on my next visit when I talked to my little Baby Love that he would be able to look up at me and I could use my animated face and voice that I use with babies! I couldn't wait to have a face to face conversation with Maddox! It may sound like a small thing to some, but I was excited! Last time, all of the things I said were whispered, and I'm sure I might whisper things again because I know Maddox can keep a secret, but I was excited to see his little face while I told him all the things I had to tell him...I couldn't wait!
Maddox's FIRST bottle! The feeding tube is still there until he fully gets the hang of it!
Holding Mommy and Daddy's hands!
Maddox on his BACK!! He wasn't able to be on his back due to his wound, but after having his shunt he HAD to spend some time on his back so that his shunt wounds could heal! It was a welcome sight to see him like this! I said he was probably more alert because he liked his new view, better than staring at a mattress!
Sleeping peacefully on his BACK after the shunt!
FIRST time in CLOTHES!! :-)
Maddox
Beautiful FAMILY photo!! Maddox can be cradled!!
Mother's LOVE!
My FIRST visit to Connecticut...
So, I'd made a quick rush decision to GET there...I needed to be with my family and meet Maddox and love him and then I could probably make myself feel better about everything that was going on. I'll spare you the details of my CRAZY train ticket fiasco and ride, but it was just that on December 26th! Before I left, I only let Mack know that there was something wrong with Maddox's back and that he needed to have surgery. I let her know that he was a tough guy and that he'd made it through the surgery well, but that I felt like I needed to be there to support and love Brandon and Kelly and that I'd like to go ahead and meet Maddox a little earlier than planned. She's a mini me in a 10 year old body and although that was all I was ready to share at that point, she realized that although she'd miss me, that I did need to be there and she was glad I was going. So off I went.
I got there around 9 PM on December 26th and was greeted by my Dad at the train station, we did a little bit of chatting about what was going on...how could we not?!? Still not understanding how this went undetected, how amazing Maddox already was, how strong Brandon and Kelly are, etc. I was greeted at the house by Jane and David, who I hadn't seen in over 5 years, Brandon, who I hadn't seen in 3 years and Kelly, who I hadn't met. Except for the circumstances, it was GREAT to be there and be reunited with everyone. We all laughed, cried, caught up on life and the baby of the HOUR, month, and our LIVES! :-) I hoped I'd get to meet this little guy the next day, but did not want to push myself into any situations. He is NEW to Brandon and Kelly, their time is limited, only two people at a time can be with Maddox, etc. When they asked if I wanted to go with them the next day, I let them know that OF COURSE I did, but I didn't want to impose. Kick me out when you need to, I will bring things to do, I'm thrilled and honored you are going to share your baby and your time with me! I was in heaven being with my family, and especially being invited into Brandon's little family!
So the next day Brandon, Kelly and I headed off to Yale. When we got there, Brandon insisted Kelly and I go in first...I kept asking if he was sure, but I was so excited! We headed back, did all the hand washing and headed over to Maddox's bed where his nurse began immediately giving a report of his day! If possible, I was more in love than I had been before meeting him. I was so happy to finally meet this little guy and to see that he was "ok" and in good hands and to be a part of his daily update. I couldn't touch, rub, kiss, and stare at this little guy enough...I had to drink him in as much as I could. This moment meant so much to me. I loved watching and hearing him suck away on that pacifier! The nurse said that he sucks as he eats through his feeding tube and that he shows normal signs of newborn hunger...I clung to any information as exciting and awesome good news! I cried and cried happy tears just to BE there! After a good bit of time, we decided to head out so Brandon could come back and have a turn and I'd go hang somewhere in the hospital.
I need to backup some here...
After Maddox was born, due to some of his features combined with having Spina Bifida, the doctors said there could be some retardation and that they'd do some chromosomal testing on him to see what was what. Well, as I walked out of the NICU at Yale with Kelly to trade places with Brandon, he'd asked her if she'd talked to the doctor to which she'd replied she hadn't. Brandon said he'd just seen him and that he said that all the major/full chromosomal testing came back negative!!! Yayyyy!!! I was so happy to be there to hear the good news! They'd just have to wait to hear back on partial chromosomes.
I headed downstairs and cried more happy tears and entertained myself until Brandon returned. Brandon and I took a turn going in to see Maddox and then left for the day a little bit later. It was a GREAT day! I got to meet my Baby Love, share in GREAT news with Brandon and Kelly, see the amazing strength and love of two amazing new parents, and have some quality time with Brandon and Kelly as well. We talked in the car about how great things were going in just a few short days compared to everything that had been said when Maddox was born. We all felt like IF the WORST thing that happened was Maddox not walking, that would be nothing compared to all the things that could've happened or gone wrong.
That evening after Brandon and Kelly headed home they had texted for some reason and Brandon said Kelly wanted to thank me for going with them...I said, she does NOT need to thank me, THANK YOU for taking me and sharing your time and your baby with me! Brandon said he knew I didn't need to be thanked as he could see me knocking people down and out of the way to get to my nephew! :-) SO TRUE!!
A few days later we returned to the hospital for my last visit during this trip...I'd be returning to CT with my family in three weeks. Brandon and Kelly were visiting Maddox every day. Their drive back and forth was about an hour each way.
I can't remember who I went in first with, probably Kelly and all of her breast milk! Ha! She'd been pumping and we all laughed at what a milk machine she was! I was super impressed with how much milk she was producing so soon after baby especially when her little baby wasn't with her. Again, I got to hear Maddox's update! I can't remember all of the details, but I know he had been getting breast milk in his feeding tube all along and a Gatorade type mixture either in IV in his belly button or feeding tube, but by my last visit when Maddox was just 9 days old, he was off the Gatorade type mix (I think or coming off of it) and solely on breast milk! I also THINK between my first and last visit they removed his IV or did shortly after my last visit, maybe I knew it was getting ready to come out...I can't remember the details, I just remember knowing there were more good things to be excited about. The amount of breast milk he was getting each feeding was also increasing and he'd gained weight...I think he was around 5 lbs 5-6 ozs. It was another wonderful visit, this time I cried and cried because I did NOT want to leave Maddox. I felt bad because I knew I had my own family to go home to that needed me, but I did NOT want to leave Maddox. I loved him so much and the thought of being so far was breaking my heart. Eventually I had to kiss Baby Maddox goodbye until next time, I'm sure I kissed him AT LEAST 21 times to last him until I'd see him again.
All in all, it was a beyond WONDERFUL visit to CT! Not just with Maddox, but with all of my family! I couldn't wait to get back with my little family in a few weeks!
I got there around 9 PM on December 26th and was greeted by my Dad at the train station, we did a little bit of chatting about what was going on...how could we not?!? Still not understanding how this went undetected, how amazing Maddox already was, how strong Brandon and Kelly are, etc. I was greeted at the house by Jane and David, who I hadn't seen in over 5 years, Brandon, who I hadn't seen in 3 years and Kelly, who I hadn't met. Except for the circumstances, it was GREAT to be there and be reunited with everyone. We all laughed, cried, caught up on life and the baby of the HOUR, month, and our LIVES! :-) I hoped I'd get to meet this little guy the next day, but did not want to push myself into any situations. He is NEW to Brandon and Kelly, their time is limited, only two people at a time can be with Maddox, etc. When they asked if I wanted to go with them the next day, I let them know that OF COURSE I did, but I didn't want to impose. Kick me out when you need to, I will bring things to do, I'm thrilled and honored you are going to share your baby and your time with me! I was in heaven being with my family, and especially being invited into Brandon's little family!
So the next day Brandon, Kelly and I headed off to Yale. When we got there, Brandon insisted Kelly and I go in first...I kept asking if he was sure, but I was so excited! We headed back, did all the hand washing and headed over to Maddox's bed where his nurse began immediately giving a report of his day! If possible, I was more in love than I had been before meeting him. I was so happy to finally meet this little guy and to see that he was "ok" and in good hands and to be a part of his daily update. I couldn't touch, rub, kiss, and stare at this little guy enough...I had to drink him in as much as I could. This moment meant so much to me. I loved watching and hearing him suck away on that pacifier! The nurse said that he sucks as he eats through his feeding tube and that he shows normal signs of newborn hunger...I clung to any information as exciting and awesome good news! I cried and cried happy tears just to BE there! After a good bit of time, we decided to head out so Brandon could come back and have a turn and I'd go hang somewhere in the hospital.
I need to backup some here...
After Maddox was born, due to some of his features combined with having Spina Bifida, the doctors said there could be some retardation and that they'd do some chromosomal testing on him to see what was what. Well, as I walked out of the NICU at Yale with Kelly to trade places with Brandon, he'd asked her if she'd talked to the doctor to which she'd replied she hadn't. Brandon said he'd just seen him and that he said that all the major/full chromosomal testing came back negative!!! Yayyyy!!! I was so happy to be there to hear the good news! They'd just have to wait to hear back on partial chromosomes.
I headed downstairs and cried more happy tears and entertained myself until Brandon returned. Brandon and I took a turn going in to see Maddox and then left for the day a little bit later. It was a GREAT day! I got to meet my Baby Love, share in GREAT news with Brandon and Kelly, see the amazing strength and love of two amazing new parents, and have some quality time with Brandon and Kelly as well. We talked in the car about how great things were going in just a few short days compared to everything that had been said when Maddox was born. We all felt like IF the WORST thing that happened was Maddox not walking, that would be nothing compared to all the things that could've happened or gone wrong.
That evening after Brandon and Kelly headed home they had texted for some reason and Brandon said Kelly wanted to thank me for going with them...I said, she does NOT need to thank me, THANK YOU for taking me and sharing your time and your baby with me! Brandon said he knew I didn't need to be thanked as he could see me knocking people down and out of the way to get to my nephew! :-) SO TRUE!!
A few days later we returned to the hospital for my last visit during this trip...I'd be returning to CT with my family in three weeks. Brandon and Kelly were visiting Maddox every day. Their drive back and forth was about an hour each way.
I can't remember who I went in first with, probably Kelly and all of her breast milk! Ha! She'd been pumping and we all laughed at what a milk machine she was! I was super impressed with how much milk she was producing so soon after baby especially when her little baby wasn't with her. Again, I got to hear Maddox's update! I can't remember all of the details, but I know he had been getting breast milk in his feeding tube all along and a Gatorade type mixture either in IV in his belly button or feeding tube, but by my last visit when Maddox was just 9 days old, he was off the Gatorade type mix (I think or coming off of it) and solely on breast milk! I also THINK between my first and last visit they removed his IV or did shortly after my last visit, maybe I knew it was getting ready to come out...I can't remember the details, I just remember knowing there were more good things to be excited about. The amount of breast milk he was getting each feeding was also increasing and he'd gained weight...I think he was around 5 lbs 5-6 ozs. It was another wonderful visit, this time I cried and cried because I did NOT want to leave Maddox. I felt bad because I knew I had my own family to go home to that needed me, but I did NOT want to leave Maddox. I loved him so much and the thought of being so far was breaking my heart. Eventually I had to kiss Baby Maddox goodbye until next time, I'm sure I kissed him AT LEAST 21 times to last him until I'd see him again.
All in all, it was a beyond WONDERFUL visit to CT! Not just with Maddox, but with all of my family! I couldn't wait to get back with my little family in a few weeks!
Here are some pictures from this visit!
My First Night - Jane, Dad, Brandon, Me & David
SO Nice to meet you! Hello Kisses From Aunt Meisha!
Aunt Meisha, Daddy & Maddox
Daddy's FIRST time holding Maddox! I forgot to blog about this! I was downstairs in the hospital when this happened so when I saw the pictures, I cried MORE happy tears!!! Maddox was 6 days old!
Look at that beautiful baby face!!
When I walked in on my last day when Maddox was 9 days old, this is what I walked in to...a WIDE eyed Baby Maddox!!!
Mommy and Maddox
Maddox holding his Mommy's hand!
Aunt Meisha holding hands with Maddox...I didn't want to let go!
Me and the NEWest LOVE of my LIFE!
Oh, so hard to say goodbye for now!
See you tomorrow kisses from Daddy!
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