Before we get into the surgery details that will take place on May 11th I want to say THANK YOU for all the love we received for JoJos first birthday. I really can't thank our friends and families enough! It truly was a special day for us. In December Tony and I were not expecting to be celebrating a year of life with Josephine. But a special thank you goes to the doctors and nurses who work so hard to keep JoJo healthy and happy. With their help we were able to have a week full of celebration!!
At Madigan we receive the best care. Hands down. Josephine's Doctors and nurses threw her a birthday party complete with a vegan carrot cake and vegan chocolate hazelnut frosting...
the start of the madness |
aftermath |
She loved every second of smearing her frosting everywhere. She was all smiles and enjoyed the attention. It brought me to tears witnessing how much these doctors and nurses LOVE Josephine. Sometimes I don't even feel like her mother. Some days I just feel lucky enough that I have been put in charge to take care of this remarkable child. Despite her trials she truly brings light and Joy into this world. When I get to see others witness her spirit I can't help but cry and be so thankful I get to spend my time with her. It is a true gift I get to learn from her and to help her through this life.
Little girl not only had one birthday party but TWO! Josephine was able to see all of her grandparents in one week (both sets from different states)! Also, my friends from college made the trip up to come celebrate her first year. I was able to spend a ridiculous amount of time making decorations for a backdrop so we could take those Pinterest inspired first birthday pictures. Pinterest should come with a warning label... "Warning Pinterest inspires you to spend a ton of money and start projects that are actually harder than the blogger portrays" Thats just my opinion! Anyways, we had a wonderful sunny day in Washington state so we could enjoy good food and friends.
preparing to destroy |
eyeing the prize |
cake shashin' |
mom and dad helping |
mal helped too |
Josephine's birthday week is one to remember! It was so fun and I can't wait for when she turns two! any theme ideas??
Now, lets get to business... Surgery is scheduled for Wednesday 11th of May. Josephine will have three procedures done at one time just so we do not have to put her under more than once. The less stress on her heart the better! She will be getting ear tubes, a port (like chemo patients) and a g-tube. We (Me, Tony and the Doctors) all agree these procedures will improve Josephine's quality of life. She will be able to take real baths again and potentially do physical therapy in the water! She has had fluid in her ears for a few months now and she is always tugging on them so we all agreed that it would be helpful for the fluid be removed to prevent ear infections and to help further speech development. We are all confident she will do great and will be a quick recovery. Our goal is to be out before Friday night! Prayers and well wishes are always appreciated!
Love,
The Seguras
Such adorable pictures of her Birthday parties!! What a happy girl! My family will be sending safe surgery prayers your way, I'm sure Jojo will handle the surgery like the champ she is! So excited for you guys, the g-tube and port alone will make Jojo's life so much less complicated! Glad to hear she will be getting the ear tubes as well, she should be a very happy little girl once all is healed!
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What a beautiful baby girl! 1 year---Wow! Thank you so much for sharing this- our thoughts and prayers for a safe surgery, quick recovery, and peace for parents!
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Thank you so much for sharing your story. I stumbled across you blog recently and want you to know it helped a ton to hear about your daughter's experience through this and yours as a mom. My 4 month old son was just diagnosed with infantile pompe almost about 10 days ago now and it turned our world upside down to say the least. We have been in the cardiac icu for 15 days now and I just want to tell you that your blog has brought me some comfort. Thank you!
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