Nay-Nay fund (Nathaniel Walther)
Here some current pictures of Nathaniel. We are waiting to confirm that he has does have APEX1 gene. Plus we are waiting also for his immune system and liver function results. I have seen his some of his lab results and they do not look good. I will update everyone as soon as get the final results.
Thank you for supporting the Nay Nay Fund!
Please Come Celebrate Nathaniel's 3rd birthday Here is a link to his party details. If you are unable to attend you send birthday cards to 639 N Main St Apt B Lake Mills WI 53551.
Nathaniel has been sick since the beginning of October with respiratory illness after respiratory illness. This has unfortunately caused him to not tolerate his feeds which means he's losing weight and is not maintaining his weight. I talked to Nathaniel's GI doctor and she told me that Nathaniel is going to need a different kind of feeding tube. Instead of the G-tube he is going to have a j G-tube. This means he will have to be connected 24 hours a day and will be fed into his small intestines instead of the stomach. The doctor believe this will stop him from vomiting his feeds and will help him to gain weight and maintain it. Nathaniel will be going in tomorrow at 3 to have this placed in Radiology and every three months he will have to come back to radiology and have a new tube replaced plus we have to watch out for small bowel obstruction, dislodging of tube and if he vomits means the tube is not placed properly which means a trip to the hospital.
Nathaniel was also diagnosed with obstructive sleep apnea and we'll be having surgery January 12th to remove tonsils and adenoids and to fix a cleft in his Airway.
We are going to be getting the whole exome sequencing blood test done within the next couple weeks and then once the results are in off to Boston to get the results and maybe finally figure out his big picture.
Please help our son during this holiday season with a donation which will be used to help Nathaniel in many ways.
Thank you again to all those who have supported the Nay Nay fund!!!
I am really sorry it has been awhile since I updated you.
Nathaniel was supposed to go to Boston in January but they decided to change it to early early spring because they want to do a whole exome sequencing genetic test 1st and have the results before we go.
Nathaniel has been sick for over two and a half months with respiratory and coughing Nathaniel also had a purple blue episode now he is on an antibiotic for a bad sinus infection and hopefully this antibiotic will clear everything up.
Nathaniel had a sleep study last Thursday and we found out that he has obstructive sleep apnea and Nathaniel will need surgery remove his tonsils and adenoids plus they are going to also fix a deep notch in his Airway. After surgery he needs to be rechecked in 3-6months to make sure the obstruction of sleep apnea is gone.
Nathaniel has gotten taller braces which is helping him to walk better and not be on his tiptoes.
I will update everyone as soon as I know when surgery is scheduled
Such an an adorable little boy! Glad to hear he gets to go home! May God continue to heal him and help you all through this difficult time ♥
I'm happy to hear that he's doing better. I was worried about the ear thing. Happy Birthday to Nathaniel tomorrow. I'm praying for a better year for him! Take care of yourselves, I know this must be horribly stressful for you.
What a sweetheart. Still praying for him. Glad his surgery went well!
Glad to hear it. He's so adorable. I'm so sorry he has to go through this.