Sometimes in the heart of a lion you find a tale or two. This is the story of life with my beautiful 27-weeker preemie warrior princess.
I love ya bebe, hang in there! Dave
P.S. you can leave a comment on my blog too! (Its the geeky link in blogs I LOVE ;-)
What kind of psycho sent ya that picture ;^)rikji up lighting the furnace every 1/2 hour in the main house now, what kinda karma is this....
love the picture, love the idea of the week, hate the term "unstable person" in that context. As a person with depression (on treatment) I don't view myself as unstable and also that is very "disability first" way of describing it. Hope this week hasn't been too bad for you and the next one is better!
Emma,Thanks and nice point. My friend Rick there found me unstable and thought to send some love my way. What are friends for?! Hope you are doing great,K
Hi Kathryn,I love reading your blog! I found it on New Year's Day when I was looking for some ideas on nutrition for my daughter. I have to admit that I was not full of positive thoughts for the new year at the time. Edie is 8 months old now and cp affects all four of her little limbs. She's not growing as she might, had she not been brain damaged, and as a result she's being prescribed a high sugar and fat diet. I'd love to see her grow, but I'd prefer to enhance her growth with real foods that provide the energy and vitamins that she needs, rather than dehydrated corn syrup and dense formulas. That's why I'm enjoying your blog. You and Ellie are going through some things that I have no doubt my daughter will encounter at some point in the future. To read about how you have dealt with difficult decisions, educated yourselves unfailingly, and continued to use your own creativity and intuition in order to try to determine and provide the things that are best for Ellie, has been very uplifting and inspiring. You have some really interesting ideas here, and I've found plenty of food for thought. Cheers to you and Ellie, and thank you for posting this blog!As far as National Mental Health Day goes, I talk to myself all the time. ;) I hope that this coming week brings better things, and a good recovery for Ellie.Thanks again,Lara
Lara,Thanks for delurking and complimenting my blog - it's really validating and nice when someone does that. And you are exactly the reason I started this blog, to help even one other parent, makes this blog a success and worth my limited free time! So I am glad this blog has helped you. Ellie is effected in all four limbs too. I believe that the airsplints we use during the Advance Therapy that we do is the only reason she has such great use of her hands. She still has dystonia, but a lot of control. After our first week in the NICU we bought Dr. Joseph Volpe's medical text book Neurology of the Newborn. That was excellent in covering any questions we had about Ellie's neurological issues. Good luck with everything too. My heart goes out to you. But I know how much you already love your baby. It's so fierce of a love isn't it, when you see them go through so much. I have to say that Ellie was really, really sick at first and it was very hard. But it has gotten way better since those early days. I look back and don't know how we lived through it all.Regarding nutrition: yes of course they have your baby on high sugar high fat diet. When Ellie was on that diet her growth did not improve at all. I believe she was not able to metabolize the rich food. It just when through her or she would vomit it up. Before we had to deal with that world of formula I had her on breast milk for 19 months, my own, and my dear friend Kate's. If your supply is low, like mine was from having a preemie, there are breast milk banks as well. Not sure what your situation is. Ping me if you ever want to talk about anything. It's great that you are researching and taking a proactive approach. Your little one is really lucky to get you as a parent!
Be sure to drop my blog then as I'm unstable as they come.
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