Two Fun “Firsts”ย 

Family and friends- Sorry I have not updated sooner than this but life happened and I got a tad bit busy ๐Ÿ˜œย 

Last week on Wednesday (April 8th), Annalise had a couple check ups. First we went and saw her neurosurgeon to follow up with her shunt surgery and get her stitches taken out. Then we went and saw her pediatrician for her 2 month well exam!
That day was a very long day for us. We were at the hospital for a total of about 4.5 hours! Let’s just say when we got home we both took a long nap. ๐Ÿ˜‰
Anyways…. After about an hour of waiting, we finally got back to get her stitches taken out. Baby Girl did NOT like that. She squirmed and made her noises the whole time. Poor thing. ย But here is a cute “selfie” I got with little Miss while we were waiting and also a before and after of her stitches!
After getting her stitches taken out, her neurosurgeon came in to look at everything. The main thing I was concerned about was how her skull bone is pushing on the shunt. Luckily he said that he is not worried about the bone or the shunt because both are pretty strong and durable but that he is worried about skin breakdown. “I can always fix a shunt but I can’t fix skin breakdown” is how he put it. So… we have to go back next week so he can re look at it and make sure it’s still okay.
While I had him in the room, I asked him about the MRI we had done. We had never officially heard the results — except that it was the same diagnosis as the last ultrasound (the hydrocephalus and hydranencephalus). He pulled the images up on the screen and told me what he saw. He pretty much said that he wouldn’t call it hydranencephalus (because there are many different definitions of it and from what he understood that meant she had no brain) because she did have some of her brain and brain tissue. So who knows what “disorder” she has. We have grown accustomed to the doctors not really knowing what to say but trying to be as informative as possible. ๐Ÿ˜‰
Anyways…. The simplest way to put the results is that she has the bottom front of her brain and a very small amount of tissue in the front. He said that she has her temporal lobes for the most part which is what controls her hearing. So Annalise pretty much only has the part of her brain that allows her to hear.
So according to him, she won’t be able to crawl, walk, talk… Basically everything except breathing, eating, sleeping, and hearing (which is what she has been doing). I asked about vision then because she does respond to light and he said she is most likely blind because the part of the brain that controls vision isn’t there. He said the eyes dilating and responding to light is more of a reflex type thing that the brainstem can do on its own. Upon hearing this, we have set up an appointment with the pediatric optometrist next week to finally know for sure if she is completely blind or not. The more we have watched her now since hearing this, the more we think she is “looking” by sound instead of actually seeing. But! We will find out next week!
After finishing up with the neurosurgeon we then headed over to her pediatrician. Her pediatrician did a full exam for her 2 month check up. (Yes we did it a week or two early because she was “behind” on her immunizations and what not.) ย But- Can you believe she is 8 weeks old tomorrow?!? Time really does fly by.
Her pediatrician checked all her vitals (which were good- like always), checked her reflexes (which she has all the normal baby reflexes!!!), checked her weight (which she was about 8 lbs 2 oz), and went over everything else we needed to talk about.
According to the lovely growth chart doctors go by, Annalise is in the 50th percentile of height and only in the 5th percentile of weight. Because of this we had to up her calorie intake and try to get her to take more amounts during the day. She is actually handling this change very well so hopefully she starts bulking up soon! ๐Ÿ˜œ
One thing I don’t think I have ever mentioned on here is that baby girl does have small tremors. It’s mainly when she is stretching and moving her muscles but it’s something we have to keep our eyes on because it could be a sign of seizures. Because they are everyday though, we will be meeting up with our neurologist sometime soon to look into it. We want to ย essentially “stay on top of it” for if she does end up getting seizures, we will be ready and know what to do and get her the necessary medicine or whatever to help with it.
We are also in the process of getting her started on occupational therapy and physical therapy to help with the little amount of brain she does have. And if she is blind then I’m sure there are things we will need to do to help with that as well. Hopefully we can get the therapies started here in the next week or two!
Also during her 2 month exam, Annalise got the first 6 immunizations every baby needs. She didn’t even flinch for those shots. And luckily she wasn’t irritable after them! She never even got a fever! Woohoo!
Overall, her appointments went fairly well and she was a trooper through it all! I’m just always so proud of her. โ˜บ๏ธ
There were a couple “fun” things that happened last week for Miss Annalise.
For the first time, Annalise found her mouth. ๐Ÿ˜‚ Since she has been having her hands all over her face lately, it was bound to happen. One morning, her hand moved across her face until her finger went into her mouth. She sucked once, made a disgusted face, and moved her hand away from her face. It was quite hilarious. I’m pretty confident she probably won’t be a thumb sucker after that reaction!

 

 

Along with finding her mouth for the first time, she also found her foot for the first time last Thursday! Now, almost every time she is stretching, she goes for her foot. ๐Ÿ˜Š The other night, when she got done eating, she was sitting in my lap, just holding her foot. So cute!
Well… That about sums up the past week with Miss Annalise!
I do want to say thank you to my co-workers and families from my job that put together a little baby shower for us this past weekend! I was so overwhelmed by the love and support from you guys!!! You guys are amazing and we are so thankful for each and every one of you!
Since I know y’all like pictures of our little princess, I’ll leave you with a few! ๐Ÿ˜Š
ย ย 

I hope y’all have a great rest of your week and remember to anchor your hope to the One who has already scripted the perfect ending! ๐Ÿ˜‰๐Ÿ˜Š

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30 comments

  1. Kriss · April 13, 2015

    What a blessing she is! Thank you for sharing her with all of us. When I saw there was a new post it made my whole afternoon. I think she is just amazing and I’m thankful that she is doing so well! We have an awesome God! -Kriss

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  2. Pam Hess · April 13, 2015

    I love to read about Annalise! I believe amazing miracles are ahead! And I BELEIVE she will do far more than any doctor will ever be able to explain! I think she is here for so many of us who need hope!

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  3. tina · April 13, 2015

    God bless you all. . I’m so glad to hear that she is doing very well. Jesus is a healer and by Jesus stripes yiur baby was and is healed!! In Jesus name …amen ๐Ÿ™‚

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  4. Jean · April 13, 2015

    Thank you so much for sharing the good news! I love all her expressions! And what gorgeous eyes! (It is hard to believe that she might be blind. I’ll be praying really hard for your upcoming appointment!) I love the pictures of her smiling and how thick her hair is getting. It looks like she has quite a personality already. She looks like a little china doll in the pictures where she is holding her foot.

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  5. kayloudee · April 13, 2015

    Thank you for sharing this, she is absolutely adorable! So funny about her finding her foot and stretching towards it ๐Ÿ™‚

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  6. red40601 · April 14, 2015

    Your daughter is beautiful!!! I followed a baby Named Taylor for a long time that had hydrocephalus and her family were told she had no brain. This amazing little miracle can walk, talk, and just started preschool. She went to Duke University for Blood Cord Transfusions I am not sure if the option is available to your family but it really made a huge difference for Taylor’s family.

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  7. dee steinbach · April 14, 2015

    God Bless you and Annalise Hope. Don’t ever believe everything the doctors tell you. My Jake wasn’t suppose to walk, talk, see or hear. He was expected to be in a vegetative state due to the severity of the hydrocephalus and lack of brain development, but he is far, far from that. He does have a type of vision impairment called Cortical Vision Impairment (CVI) which is due to lack of brain tissue for processing vision, but with consistent intervention and structured experiences, he “learned” to see. He sees certain things, but not everything. He sees his communication system which is so very important. There are specific strategies that can be used to work with children with this kind of vision impairment and the sooner the better, but make sure you get the neurologist or ophthalmologist to give her a vision diagnosis so she can qualify for teacher of the visually impaired services. Without a diagnosis like CVI, she can’t access these services. These services were invaluable for Jake even though we didn’t know this was an issue until he was older.
    I am so glad to hear you will be starting PT and OT services. I would also encourage you to investigate vitamin and nutrition supplements that support the brain and nervous system. These have also been extremely valuable to Jake in his journey.

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  8. Erika · April 14, 2015

    The many faces of Annalise!!! ๐Ÿ˜‚ she is so precious and just more evidence of how wonderful our wonderful God is!!! Keep sharing her many firsts to come and of course her gorgeous pictures!!! God bless!!!

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  9. Holly Litton · April 14, 2015

    Love that we have the special privilege of getting to know Ms. Annalise. Prayers for all of you, and gratitude to our God For all His grace and love!

    Like

  10. Ashley · April 14, 2015

    I so look forward to your updates ๐Ÿ˜Š so happy everything is going well. Love all the photos! She is soooooo precious! And all that hair, adorable! Always in my prayers ๐Ÿ˜˜

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  11. Lindy · April 14, 2015

    Her little smile and dimpled chin is so adorable! And she is getting lots of hair! We continue to keep you all in prayer! Thanks for sharing your sweet baby with us! Lindy and Tandy Wiens

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  12. Cheryle Olson · April 14, 2015

    She is a blessing๐Ÿ’•

    Like

  13. Alicia Lynch · April 14, 2015

    Our Neurologist says our son doesn’t have the part of the brain for seeing either, and is still amazed that he can actually see perfectly fine. So saying don’t be surprised if she can actually see!
    And she is so cute and so expressive. Love it!

    Like

  14. Christina · April 14, 2015

    I absolutely love this little angel!! I look forward to all the updates that I can get! You show all these Dr.’s sweetheart!!!!!!!!!

    Like

  15. Rhonda Reinhardt · April 14, 2015

    So precious! Love these updates. Praying now for your little family.
    Blessings!

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  16. Cindy Hall · April 14, 2015

    She is so beautiful! Such big blue eyes, bright and shiny! We are keeping you all in our prayers. God is good and yes He is our awesome healer! Annalise, you keep your beautiful smile beaming brightly and know that God does have something special in mind for you. You are an image of His love and it shows. Love to Mommy, Daddy and you!

    Like

  17. Kim Rodgers · April 14, 2015

    I just want to say that I have been through a few develepmental psyc classes in college and we have discussed how flexible the brain is, especially childrens. There are instances that people have had half the brain cut out to control severe seizures and learn to do everything. Even one instance where over a very long time a man had fluid build on is brain where he eventually had NO BRAIN! he functioned fine, had a job, family and everything…Follow your blog and love the updates. Pray for you and your family…Annalise was one of my choices for my daughter but I named her Adalayna instead she was born 31 weeks, weighed 2 lbs 13 oz, little chance of survival and is now a feisty 3 yr old (almost 4) ๐Ÿ™‚

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  18. Joanne · April 14, 2015

    Thank You for sharing your story. Annalise is a beautiful angel from God. I love her expressions. God. Less you all.

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  19. Joanne · April 14, 2015

    God Bless you all.

    Like

  20. Susan Kroeker · April 14, 2015

    I am so blessed by the Lord when I read your updates! I will continue to pray for Annalise Hope. It is an amazing journey that God is leading you on!

    Like

  21. Bec · April 14, 2015

    Love reading your updates and love the photos too. Annalise is just so cute ๐Ÿ˜Š I’m looking forward to reading the next part of your journey. ๐Ÿ™

    Like

  22. Carolyn Rempel · April 14, 2015

    A very dear friend of mine has a grandson with serious physical and mental challenges. When she shares stories of him with me she always tells me how God made him perfect in every way. And she is right.

    God has made beautiful Annalise perfect in every way. Though in the “worlds” view she is not perfect, our Father made her exactly perfect. His ways are higher than our ways and His thoughts higher than our thoughts so we do not always understand His reasons and purposes. I have been learning lately to trust that God will give me what He needs to give me. And that may not necessarily be what I want Him to give me. Yet if I am honest when I pray and sing “I give you my life” I need to trust that He sees the big picture and has a reason for choosing the road He is taking me down.

    I can tell from reading your posts that in your spirit you and your husband trust and understand that God chose to share His precious gift Annalise with you. What a beautiful gift you have been given. Her smiles touch my heart because I know those smiles come from joy in her spirit, a joy that her Father has given her.

    Many nights as I wake to pray I pray for Annalise and your family. I am so thankful He chose your family to take care of His precious girl. And I am so encouraged by your faith, your courage and your testimony. May God give you peace in your heart daily and rest in the night so you can walk this road refreshed and with joy. And thank you for sharing your precious gift with us.

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  23. Kerrie Marquart · April 14, 2015

    OMGosh, I love her so much!! She is so precious and her eyes are sooooo Blue! Take heart as you well know, nothing is beyond God’s healing. Look at Little Rylen Lynch. I have followed him from Birth and he is walking,learning to talk and just an adorable little boy who is a joy to everyone! When my husband was dying of cancer, it made us joyous just checking on Rylen all the time. God will bless you both and your beautiful baby girl, I am sure of it. โ™ฅ Thank you so much for sharing!

    Like

  24. Dolly · April 14, 2015

    What a sweet little girl! She is so blessed to have you as her parents to love her and adore her. I have a former brother-in-law, Blaine Yorgason, who wrote a book about their sweet little Charity, who was born with only a brain stem, if I remember right. It is titled, One Tattered Angel. It is a wonderful book! A short, easy and touching read. I would be happy to send you a copy if you will give me your address, or the book can be purchased on Amazon for about $16.00, or at Deseret Book on sale right now for $9.99. We also have it in our libraries here in Utah. I don’t know if it would be in a library close to you or not. I came across your blog a couple of months ago and look forward to each post! I would be so happy to send you the book if you would like it.

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  25. Christina · April 14, 2015

    Most infants don’t “discover” their feet until 4-6 months old so she’s definitely ahead of the game and especially to always be reaching for them. Smart girl! Sometimes the brain compensates and rewires, especially when it’s missing from the get go. I think big things are ahead for Annalise.

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  26. roonusa@comcast.net · April 15, 2015

    She is so sweet and adorable. Sending prayers daily for her … thank you for her updates

    Like

  27. ann kozlowski · April 16, 2015

    I’ll continue praying for your little girl. She’s a beautiful baby girl. She’s a blessing from God

    Like

  28. Fiona Schandl · April 17, 2015

    I stumbled across your blog and enjoy reading it. The strength you all have is amazing. She is one lucky, beautiful girl.
    Thanks for sharing her story.
    Love and hugs.

    Like

  29. joannawiggin · April 19, 2015

    Love your family and this blog! Thank you!!

    Like

  30. Sandy Cain · April 19, 2015

    She is a sweetie! They are so cute when they first find their feet, they act all surprised, like, “Oh, is that MINE?” Thanks for all the pictures! : )

    Like

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