We made it back home this evening around 7 p.m. with our day starting at 7:30 a.m. I'm so glad to be out of the van! It's been such a long trip! Cayman has traveled over 1500 miles over the last week. I am still amazed and so thankful at how well she traveled. She cried very little. Once in awhile she would complain but soon would settle down and seemed content.
Pediatrician appointment:
Duke had given us Cayman's blood work lab results to take to the doctor. There were a few numbers they wanted the doctor to be aware of. Her bilirubin is higher than it was (jaundice), her protein is low, and her hemoglobin is low (anemic). The doctor wants another set of labs taken within this next week and for Cayman to see a nutritionalist. GESH she has enough appointments and people she has to see!!! Plus she has been stuck with too many needles as it is! But I understand these things are important to stay on top of for her health. So we're taking her to a Homeopathic Practitioner that I highly trust and we were planning on taking her there anyways. So we'll do that next week. Other than that, Cayman is gaining weight nicely and everything else looks great.
Neurosurgeon appointment:
He was very pleased at the way Cayman's head looks. It measured 43.5 cm. Last week it was 41 cm. So it's come back up some. Numbers in Hydrocephalus have me all messed up. Since 20 weeks pregnant we watched her head grow to an unhealthy circumference. So it's been encouraging and relieving to see the number get lower over the last month than higher. And now we're back to having the number get higher...yet this time it's a good thing. Talk about seeming messed up!! Other moms with a Hydrocephalus baby I'm sure can understand the obsession over measuring your baby's head. Over the last couple days when I would measure Cayman's head and it was growing I freaked! Yet this is what the doctor told us he wanted to see, but it's so hard to feel comfortable with an increasing number when before an increasing number was always bad news. So I've gotta quit obsessing over the number and just go off of what the doctor says is good and bad. So Cayman is doing good. Dr. Maher is no longer talking about taking her back to surgery soon. If there is any changes he'll make it's more likely in the shunt setting to increase the fluid drainage.
Here's the difference in Cayman's head. The pictures on the left were taken April 6th and the ones on the right is today, April 17th.
Right now our lives consist of GO-GO-GO. I rarely stop long enough to realize how tired I am. Usually I can tell on the days when I can't seem to bring myself to a single positive thought. I'll just sit and hold Cayman and cry sometimes...praying the whole time she does not realize my pain I feel from watching her suffer from her anomalies. Mike made a good point today when he said "Let's not let Cayman's issues stress us out so much that we miss out on enjoying her to the fullest at this age she is." So true, and that is what I want too! But I can't when it seems like all we do is live out of doctor offices. So this is our plan: we are going to take a serious look at Cayman's calendar and rule out all the appointments that are not so crucial to her right now. I don't know if that'll work out or not, but right now it's so hard to live more on the positive side when every week Cayman is at some different doctor getting poked at, more evaluations, and more opinions that put such fear in us for Cayman's future.
Pediatrician appointment:
Duke had given us Cayman's blood work lab results to take to the doctor. There were a few numbers they wanted the doctor to be aware of. Her bilirubin is higher than it was (jaundice), her protein is low, and her hemoglobin is low (anemic). The doctor wants another set of labs taken within this next week and for Cayman to see a nutritionalist. GESH she has enough appointments and people she has to see!!! Plus she has been stuck with too many needles as it is! But I understand these things are important to stay on top of for her health. So we're taking her to a Homeopathic Practitioner that I highly trust and we were planning on taking her there anyways. So we'll do that next week. Other than that, Cayman is gaining weight nicely and everything else looks great.
Neurosurgeon appointment:
He was very pleased at the way Cayman's head looks. It measured 43.5 cm. Last week it was 41 cm. So it's come back up some. Numbers in Hydrocephalus have me all messed up. Since 20 weeks pregnant we watched her head grow to an unhealthy circumference. So it's been encouraging and relieving to see the number get lower over the last month than higher. And now we're back to having the number get higher...yet this time it's a good thing. Talk about seeming messed up!! Other moms with a Hydrocephalus baby I'm sure can understand the obsession over measuring your baby's head. Over the last couple days when I would measure Cayman's head and it was growing I freaked! Yet this is what the doctor told us he wanted to see, but it's so hard to feel comfortable with an increasing number when before an increasing number was always bad news. So I've gotta quit obsessing over the number and just go off of what the doctor says is good and bad. So Cayman is doing good. Dr. Maher is no longer talking about taking her back to surgery soon. If there is any changes he'll make it's more likely in the shunt setting to increase the fluid drainage.
Here's the difference in Cayman's head. The pictures on the left were taken April 6th and the ones on the right is today, April 17th.
Right now our lives consist of GO-GO-GO. I rarely stop long enough to realize how tired I am. Usually I can tell on the days when I can't seem to bring myself to a single positive thought. I'll just sit and hold Cayman and cry sometimes...praying the whole time she does not realize my pain I feel from watching her suffer from her anomalies. Mike made a good point today when he said "Let's not let Cayman's issues stress us out so much that we miss out on enjoying her to the fullest at this age she is." So true, and that is what I want too! But I can't when it seems like all we do is live out of doctor offices. So this is our plan: we are going to take a serious look at Cayman's calendar and rule out all the appointments that are not so crucial to her right now. I don't know if that'll work out or not, but right now it's so hard to live more on the positive side when every week Cayman is at some different doctor getting poked at, more evaluations, and more opinions that put such fear in us for Cayman's future.
5 Showin' Comment Love:
Her head looks amazing!!! What a difference! You must be thrilled and relieved!
Mike is right. Don't let yourself miss out on her babyhood. Take a few minutes each day to let yourself forget the problems and just see her as your dear little baby :)
You are lucky to have a husband like Mike. It would be cool if sometime in the future, our two families met up someplace. Maybe one of the hydrocephalus conferences they have. Good to hear you are home, and it was a safe drive
~The Donald
donaldrsorensonesq.blogspot.com
That is great! She looks amazing!
I've been updating our Wednesday Bible study about her progress, and they have all said that they would love to meet you guys some time. They are awed by your faith, and want to encourage you.
Kris,
Hugs and I love you! Cayman is looking amazing and I can't wait to get a picture:) I think that you probably don't realize how well you and your little family are dealing with Cayman's special needs. We do not come from a line of women who are faint of heart! You know that I (and a lot of my friends! haha) are praying for you guys constantly, reading your blog daily and getting other updates from my mom.
I love you guys!
-Ang
P.S. James is starting on my Cayman shirt! I'm going to get the first adult shirt! Yea! I'll be sure to send pics :)
I'm so glad to hear (and see) that Cayman is doing better. Welcome home! I pray that things will be able to settle down and that you will have wisdom about how to handle all the craziness of doctor visits and stats and fears, etc. I agree with everyone else that you are doing a great job in a tough situation. I'm so glad to know you and your family!
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