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Olivia and new sister Madison
11 February 2007
The day before, I picked Olivia up from daycare, they said she was a little fussy and had to give her Orajel twice, but other than that, everything was pretty normal. Until she got fussy during her bottle that evening and vomited it back up. We waited awhile and tried to feed her again and she got sick again and went to bed about 2-3 hrs earlier than normal.
She was a little fussy during the night a few times and her dad slept in his recliner with her from about 4-6am. He brought her to bed with me and I noticed her right arm was straight, but she looked like she was sleeping good, so I left her with Daddy and took my shower.
When I got out, Daddy told me to look at her because her legs and arms were stiff and she wasn't waking up for him. I rushed in and tried to arouse her, but she wasn't responding. Her left pupil was dilated and I immediately called 911. The rescue squad came and I rode with her while Daddy drove separately. Once in the ER, they did a CT scan and showed us where there was bleeding on the left side of her brain. She still wasn't responding to being stuck for an IV or anything, it was heart-breaking.
The doctor told us we needed to do emergency surgery to release the pressure in her brain and remove the blood. The neurosurgeon on call got there quickly and Olivia went into a 3 hr surgery by 9 am. LONGEST 3 HOURS OF MY LIFE! While in surgery, she stopped the bleeding and found the AVM in Olivia's brain. She removed all that she saw and did another CT scan that showed it was gone. She had to leave the bone flap out of her head to allow for the swelling that followed the surgery.
I think I was in shock for about a week, but I do remember seeing Olivia for the first time after her operation. Daddy and I walked into her room and there were several nurses/respiratory people by her bed. She had a breathing tube and had a feeding tube (both were out within a few days). She had an oxygen sensor on one finger and an IV on one ankle. It was hard to see, but we were just so glad she was alive! She was in the PICU for 5 days and the pediatric floor for one day before being released. One PA told me that if we had waited to call 911, she probably wouldn't have made it! The Lord was taking care of us!
One of the hardest things to deal with in the hospital was watching how many times she was stuck by a needle! At that age, there is a lot of baby fat and it was very difficult to find a vein for blood work or an IV. Don't get me wrong, all the staff was very supportive and professional-we love them, but it was just hard to see Olivia go through that so young. Her father and I would sing to her to get her to calm down sometimes.
About 2 months later, she went through another surgery to replace the bone flap and was in the hospital for another 5 days. They drained some fluid off about 2 days after that surgery, but we did avoid a shunt.
That hospital stay was hard, too, but I stayed in the hospital with her about 98% of the time! My mother stayed with her one night and Daddy stayed one night, too. The love and support from churches, family, extended prayer chains, and our many friends in the community and at work was just overwhelming.
Olivia has physical therapy now and is starting to wean off of her dilantin medication (as of April 1st, 2007, will be done with it). She has not been able to grab toys with her right hand, but she is using it more now-moving it out from underneath her when rolling on floor, etc. and she opens it more than she used to. Her leg seems to be fine-she loves standing and walking with assistance. She sits up very well and side-sits, too, now! She had a left gaze preference at first, but that cleared up after a few weeks. She has amazed us with her resilience and determination.
She will never remember any of this, but we will be sure to share with her how she is our miracle baby! I've been staying at home with her since all this happened, but plan on going back to work next month in March. This is a pretty short version of all that happened, but I think I got most of the information across. If anyone wants more info or someone to talk to, email me.
Update: 28 August 2007
Olivia is now 16 mo. old and doing great! She has follow-up appointments with Dr. Wilson, neurologist and Dr. Apfel, neurosurgeon, but they are being spread out further and further. Both doctors are glad to see her doing so well and tell me to just take one day at a time and we'll deal with anything if it happens.
She has not been on Dilantin since April. She has physical therapy once a month now (was weekly at first, then every 2 weeks until this month). This is all coordinated by Easter Seals of Va. and Brain Injury Services of Va., two of the greatest organizations ever! On the Easter Seals website, scroll down to "Meet Olivia"! Olivia is walking really well and into everything. She is opening her right hand more and more. Even though she doesn't use it to pick up toys, yet, we are hopeful that this will happen over time and as she gets older and understands she needs to try to use it more. Since she's used her right arm in crawling and balancing/catching herself while walking and standing, I think it has made her more aware of it. She plays with it using her left hand (so good!) and definitely has a good grip.
Olivia goes to daycare Monday through Friday and does great in there. The workers were overprotective at first, but now they treat her just like the rest. They are the most caring people I could ask for to take care of Olivia since I must continue to work. She is talking some, mostly her own words, but we can pick out "da-da", "bye-bye", "hi", "ki" (kitty), lots of squealing and laughter! She's cutting her 4th tooth now and still takes a night bottle. She drinks from some sippy cups, but with only using her left hand, it's a little difficult for her sometimes. She'd much rather drink out of mommy and daddy's cup, anyway! Olivia loves to give hugs, even pats other's backs, and will give kisses if you are lucky!
Her therapist says her right leg is still a little weaker, but to non-therapists, you can't tell. She seems to use both right and left feet in going up stairs, etc. Dr. Wilson has mentioned that she could have a vision impairment, but has already compensated for it - will know more once she's old enough for vision tests. But if that is all we have to deal with after an AVM bleed, we'll be a blessed family. We already are a blessed family! Brian and I love this little girl so much; she is just growing up too fast! We take her to church and just pray we will be able to relay to her how much God has been a part of her life, since the beginning. I've made her a scrapbook with pictures of her with her doctors and therapist, etc. It'll be neat to look back on it and show Liv the ones who had a huge impact on her recovery...I guess I could make a page with her, me and Brian, huh? There is absolutely nothing in this world we wouldn't do for her!
You may have read my recent email to the group: my doctor has recommended genetic testing for Olivia due to the AVM since it may affect our decision to have future children. I am going to talk to Olivia's pediatrician and neurologist about this, but I don't think we are going to put her through that. It seems her AVM was random...we don't know of a family history.
Update 10 April 2008
Olivia turns two on the 14th-hard to believe! She is doing very well with therapy and generally speaking, everything else, too! We have physical therapy once/month, occupational weekly, and speech bi-monthly now. She is wearing an AFO on her right leg, to help walk with her heel down first and to keep her knee from locking. Wearing it only 3 months, her rehab doctor now says she's outgrown it and this next one she's fitted for should be her last!!! Alright! It has helped her with balance, turning her foot straight when walking, among other things. She started wearing a hand brace last week, as well. It goes around her thumb, velcros at the wrist, and another strap velcros from the back of her hand, around her arm a couple of times and velcros above her elbow. It's a strange looking thing, but she is tolerating it well and it is supposed to help her turn her wrist out and open her thumb even more.
In OT, she practices weight baring, stretching, and grasping with her right hand. PT wants her to get a Kettler tricycle this summer and swim a lot with her arms to build the muscles. Therapy is a fabulous thing! Olivia has done so well, all her doctors and therapists agree. She is saying approximately 30 words now and has changed "ma-ma" to "mommy" which I find adorable! Her grandma is "nay-nay" (which is exactly what my sis and I used to call our grandma!) even though we tried to get her to say "nana". Her aunt Angie, my twin sis, is called "Gee" (hard g). Too cute!
Back in January, Olivia did undergo another surgery to repair a bone defect. It was something that came about since her last surgery 11/06, where the bone flap that was put back in started to be reabsorbed into her system. The bone around that flap was not fully recognizing it as bone and had started to grow above it in a spot or two, even and there were several gaps you could feel and/or see in the CT scan we had done in December! (We did the scan with no drugs, too - which I'm proud of!) Yeah, a bone defect after all she's been through already.unreal. Very random thing to happen, and the neurosurgeon and her fellow staff believe this happened because the bone was so "young" and new and small that it hadn't developed quite enough in Olivia's 5 months of living to withstand the freezer for 2 months between surgeries. Obviously, it showed no signs of disintegration at the point of Olivia's second surgery. I just want to share, also, that I am the one who kept a check on Liv's head and persisted that Dr. Apfel look at it during every check-up last year. I am pretty paranoid now, I'll admit it! But that is OKAY! Everyone should have the confidence to go with your gut and not be afraid to ask questions, schedule appointments, etc. with your doctors. Medical science is just that, science. It's not perfect, but God's love is! And that is what our family looks to for support and direction. So, back to my update, Olivia was home in 2 days after this surgery and recovered very fast. I stayed home with her for 4 weeks this time. She's such a trooper. Dr. Apfel is going to x-ray her head every 4 months or so to evaluate bone regrowth.
In December, Olivia did a vision test that came back normal, so that is great! She is walking up and down stairs with a little help, trying to jump with both feet off the ground at the same time, and very determined and independent, as usual. She's starting to play with Barbies (ken!) and My Little Ponies now. Loves her play kitchen set and all books! Her Elmo birthday party is this weekend.should be lots of fun and excitement!
Thanks to all again for prayers and thoughts.Olivia is a blessing to us and one of God's true miracles!
Update 8 August 2008
Olivia is now at the ripe 'ol age of 27 months old! Notice the pics attached are "then" and "now" Aug '06 and Aug '08! She continues the therapies through Early Intervention/Easter Seals of VA until she turns three and we'll see what she needs at that point. We are going to schedule an appointment to see Dr. Kerkering, who is a Pediatric Neuro-developmental doctor here in Roanoke, at the suggestion of several of her other doctors. She'll give us her opinion on Olivia's developmental delays and may continue to see her or may not. We still take her to see Dr. Brown in Radford every 3 months to monitor her therapy needs, wrist splint and leg brace. He would probably be the one to do botox injections, if and when we decide to go forward with that. Physical therapy is still once/month (Heather is moving to Cali so we'll be getting someone new in Sept. --she's seen Olivia since her first surgery back in Oct. of '06) Olivia's Occupational therapist is Cynthia, who comes to see Olivia once/week at daycare. She gets her to work a lot with her right hand and will be starting constraint therapy soon, per Dr. Brown. He said this will do her a world of good. Brian and I have started doing this at home with her, too, and are working our way up to 30 minutes at a time per day. Olivia uses her right hand ON HER OWN all the time now, basically to assist her left hand in playing, eating, or whatever...it's a beautiful thing! We still are working on gripping and more weight baring, and do several stretches every night before bed. Now, the Speech therapist, Jenny, see's Olivia twice/month and will be doing a test with her next week to determine if her language level is right on track or still a little behind. Let me just share that Olivia has been picking up a lot of words in the last month or two and now says "wanna see" and "what's that?" ALL the time. To me, she's coming right along with speech now. Oh, and she still has followups with Dr. Apfel, neurosurgeon, every 3-4 months since her last surgery in January. We did an x-ray of her head back in May and it looked really good, so no more xrays unless something changes!
Her new foot brace will only come up to her ankle--this will be the 3rd one she's had in 7 months! 2nd was because she outgrew the first one in a matter of 3 months, and this one is because she has improved so much, she doesn't need the taller brace anymore! I think the plan is to get her into just an arch support insert for her right shoe. Her feet are the flattest feet in the world anyway, just like her daddy! :) But without her brace, she jumps off the ground now and climbs on absolutely everything. She does really well as far as balance without her brace, too. Loves to run, go down sliding boards, throw (and try to catch) balls, and swim!
We've hit another milestone lately--she hasn't had her pacifier since last Thursday night. She's only been getting it at bed time for a few months now, but she started getting fussy for it for nap at daycare lately, and normally doesn't have it there (maybe twice since March)...so we decided to take it away cold turkey. She's adjusted pretty well, I must say. She's getting ready to be moved up into the 2's room at daycare, which doesn't allow them anyway, so it's a good thing. The bigger kid environment should help Olivia even more with speech and the "pushing around" other smaller children, too. *Yes, I'm told our angel had a little boy in a headlock one day last week and he bit her on the arm!*
Sorry so wordy, but I thought it was time for my ritual "Olivia Updates" email! LOL Hope everyone is having a great summer! Please continue to pray for the healing of Olivia's head and her determination to work hard to use that right hand. We thank you all for your continuous support!
Update 26 March 2009
Olivia is doing great! We have continued OT, PT and ST since the last update and will continue OT and PT after Early Intervention runs out on her 3rd birthday coming up in April. Her speech has come a long way in the last year and we are not so concerned with that at this point. She's now saying 3 and 4 word phrases and we don't notice any sounds that she can't say. She has a left shoe insert for arch support and still wears the SFO on her right foot. We use kinesio tape for awareness on her right arm and leg, also.
We did try something new back in December-botox injections in her arm. There were 5 different injection sites and it did relax the muscles in her arm so it was easier for her to reach up and do other specific motions that she normally didn't do. After the injections, her OT and her dad and I worked hard on weight baring and using that right hand/arm for bilateral activities. We still want to see more progress with gripping and putting more weight on that arm, although she definitely is using it more and more for assisting her left arm with carrying and holding things. It's been 3 months since then and the botox seems to have worn off already because she's starting to hold her arm bent and out again. We see that doctor again next week (every 3 months) and so I'm sure we'll see about doing the botox again soon.
As for other things, she has cut every baby tooth except one of her two year molars-yay! Also, she's now sleeping in a cute princess toddler bed and we've moved her to a bigger bedroom so we can make the smaller one into the new baby room. We're expecting another little girl in June! Olivia is our pride and joy and now we'll have yet another angel to add to our family!
Update 24 August 2009
Things are going good for little miss Olivia these days. She has a new baby sister, Madison, whom she adores! We knew it would be a little hard at first because she's been so used to getting all of her mommy and daddy's attention, but she's adjusting well.
Olivia is still doing occupational therapy once a week to help her use her right hand more. She is more cooperative than not during most sessions, which is great being a three year old! She still has issues with gripping something very hard or holding on with the grip sometimes, but as she does it more, it should get better. We haven't had her wearing any arm brace or tape, but will start that again soon. Her right foot has the brace still and a left shoe insert helps with the development of her arch on that foot, too. She hasn't needed physical therapy since turning three in April and her speech is progressing, as well. There are times when it's hard to understand what words she's saying but the majority of the time, she communicates well and we do not feel speech therapy is needed anymore, either. We are working on getting her to ride her tricycle better and anything else that requires use of both hands. This summer she's enjoyed playing in her baby pool, slip'n slide, sliding board and going to the lake. The girl has no fear whatsoever of water!
We plan to do botox injections again soon in her right arm and hand, but will probably only have time to get in one appointment before the end of the year since we missed an appointment in June and can't get another one until October. The last time she had that done was in Dec. '08 and it relaxed her arm muscles for at least two months. We had a followup appointment with her neurosurgeon in June and are still concerned about the gaps in her head where the bone is still not filling in fully since her last surgery. It can take years to fill in, but it seems the middle part is the only part forming more bone. We want to avoid surgery if at all possible, so it's just a waiting game right now. Olivia is in no pain and if it doesn't bother her, we're ok with waiting, too. Having a bone defect to deal with after all she's been through doesn't feel very fair, but we'll deal with whatever God gives us. He gives us strength every day to face various obstacles and we will never stray from Him!
Kristy Call
GO**VT
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