Lucy's eyes had been goopy and matted for 3 or 4 days - the Dr. called her in some eye ointment Sunday, but Sunday night she started pulling on her Left ear...Oh no...so I made an appt. first thing Monday morning with our pediatrician. When we arrived for our appt, there was a lot more that want to talk about besides her ears. I wanted to talk about her reflux, her arms (she holds them awkwardly behind her a lot and then when she pushes up, she is happy for a few seconds and then cries), the OI diagnosis, doctors we would like to see, etc. We love our pediatrician, we are so lucky to have him, but he told us that he just didn't have time to talk about all that, we needed to focus on her eyes and ears. He looked at her ears and said they were fine and sent us on our way. Grrr!
I really didn't get any helpful feedback, so I turned to my OI parents FB page and our therapists at the Bell Center. Our therapists are wonderful! It just so happened that there was a parents meeting at the Bell Center Monday night. After the meeting, Kate our PT, gave me a couple of tips in handling Lucy that were great!
Tuesday, I took Ella and Lucy BACK to the pediatrician for their 4yr and 6mth check-up. Ella is doing great - needs to eat healthier, and is very petite. The Dr. estimated that she will be between 5ft and 5'3"as adult. That puts her around the 15%tile. Lucy, is in the 0%tile but is maintaining her growth curve, so that is good. Her head circumference is dropping off. I don't know what that means exactly, but the Dr. says we need to watch it. None these stats rattle me much. I have perfectly petite little girls :)
While we were there we talking about Lucy's arms,we watched her on her tummy. She pushed right up and played happily...just to prove I was a crazy person! Then he rechecked her ears and said that she did have an infection in her Left ear. TOLD YA! At least I wasn't totally crazy. We talked about one of the Dr.s I want to see, an endocrinologist, Dr, Latif at Children's, the wait to see him is a year. He said he would try to get me in a little sooner if he could.
The next day, I took Lucy to get fitted for her Helmet. She felt terrible and she wasn't eating, but we had appointments everyday so we couldn't take a break for an ear infection. Poor baby...she's a trooper. Jason and I had gone back and forth, debating whether or not to go through with the Helmet, especially in light of the OI diagnosis. We were worried about the weight of the helmet on her soft bones. Could it cause her neck to get worse? Could we bear to cause her to be uncomfortable, knowing at any moment, she could have a break and have to endure the pain of a fracture in addition to the discomfort of wearing the helmet? Do we leave it alone and just hope that her head rounds out in time. Her right ear was clearly farther forward than her left. It could cause her difficulty holding glasses on, wearing earphones, jaw problems, etc. These were practical reasons to consider, but of course there were vanity reasons to consider as well. And finally, it was very expensive and not completely covered by insurance. What if we purchased it and then she couldn't tolerate wearing it. Hundreds of dollars would be wasted.
In the end, we decided that it was worth the cost. You can only use the helmet during the window of time when her bones were soft and her sutures were still open. We couldn't decide later that we wanted to do it. It was now or never. The weight of the helmet was only a few ounces and we felt like it would actually be a good therapy tool when she was working on her tummy, to strengthen her neck.
When her head was measured, the technician determined that she had 10.6mm of cranial vault asymmetry. It was suggested that anything between 6-8mm of "deformity" was slightly recommended, 8-12mm was recommended, and anything over 12mm was a given. She fell right in the middle of the recommended range, so we felt like we were making the right decision. They told us she would need to wear it about 3 months. She fussed a little when he first put it on, but after that she was good to go.
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Thursday, 8am - Ella had a dentist appt. 12-1pm - Lucy was at the Bell Center. 3pm-6pm I was at Children's for a pulmonary appointment that I was DREADING. I was only keeping the appt because my pediatrician had gotten us in. It was only a follow-up and I felt like it was a waste of time. (I also have a full time job...for the best company in the world! They are amazing for letting me keep all these appointments!)
It turned out to be the BEST RANDOM APPOINTMENT EVER!
Honestly, I was at the end of my rope. Too many appointments, too many emotions, not enough prayer, not enough faith. But my God sustains me! I am so thankful for His grace and mercy in the ways He reveals himself to me. Though I am weak, He is strong. He never fails me. He reminds me of this over and over.
We arrived at Children's hospital at 3pm for our appt. We waited and waited...we were the last ones to be seen. I was passive-aggressively standing at the door tapping my foot. At 5:30 the pulmonologist came in to look at Lucy. He was VERY interested in her diagnosis. He told me that he had done an internship with Dr. Glorieux in Canada (the OI rock star geneticist!) GET OUT!! What are the chances? There are no coincidences in life. He wanted to know why she hadn't started treatment and why she hadn't gotten a Dexa scan to measure her bone density. YOU TELL ME BUDDY?!?!? Then Lucy proceeded to spit up all over him.....multiple times!! Hahahaha! I would have felt bad for him, except I was so glad, that finally a medical professional could see first hand how bad her reflux was!! She knew exactly who to spit up on!! (The image I get is of the whale....knowing exactly where God wanted him to spit Jonah up! lol!) I could have kissed that Dr.! He flew into action...He was making phone calls, writing orders, and requesting records. I told him that we wanted to see Dr. Latif but the wait was a year. He told me that he would try to get us in sooner. He called x-ray and ordered a DXA for the NEXT DAY! AND ....he wrote us a prescription for Previcid! Woohoo! So much for a wasted appointment. Thank you Jesus!!
Hindsight is 20/20 and if we knew the Lord's plans, life would be a lot less interesting.
We showed up for the DXA the next day and the technician would not do it. UGH! She said that they didn't sedate infants for the test and Lucy would have to be completely still and there was no normal range at her age anyway and to come back when she was 5! There is no happy ending to this story. We left there without receiving the test. I did however, get a chance to educate her on OI and the importance of getting this test done. Like it or not, Children's Hospital of Birmingham Alabama is where we will be receiving the majority of our care and while it is a wonderful hospital, they have NO experience caring for Children with OI. Hopefully, before our story ends that can change. Awareness, Education, Advocacy!
Pushing up on her Tummy!!
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| From Lucy 6 to 7 months |
Saturday, the 21st, Lucy sat up....sort of...with help...propped on her arms....for a few minutes! Anyway! I'm claiming it a victory and a milestone!!!! Go Lucy!
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| From Lucy 6 to 7 months |
Ella found a turtle named Lily in the backyard. Poor Lily got to live on the deck all afternoon, while Ella tried sat in the window observatory and watched her every move.
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Tuesday the 24th, Melissa, our therapist from the state early intervention program, had us bring Lucy's highchair into work. She met us there to modify it for her. She used ethafoam, its pretty firm, not just something you can get at a craft store, an electric knife, Velcro, and some contact paper. Easy Peasy! This modification made her highchair a much safer place for her to sit and play! It lifts her up a little bit and she can work on her balance, core strength, interact with the family, and we don't have so worry so much about her spine position!
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| From Lucy 6 to 7 months |
Its not elegant, but it works!
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| From Lucy 6 to 7 months |
(Before) She went from - uncomfortable, too low, leaning to the side with a towel stuffed down beside her.....
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| From Lucy 6 to 7 months |
(After) To sitting upright, back supported, arms at a good height.....and plenty of incentive to make a mess!
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| From Lucy 6 to 7 months |
Wednesday, April 25th, At Daycare - Lucy's on the move! She also had her first appointment to have her helmet adjusted today.
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| From Lucy 6 to 7 months |
2 days post helmet adjustment....grrr!
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| From Lucy 6 to 7 months |
Friday, April 27th, Ella's class went on a field trip to the zoo!
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
BFF's
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Sweet Babies!!!
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| From Lucy 6 to 7 months |
Saturday, the 28th, one of the Ladies Sunday School classes at our church, held a Benefit yard sale to support Lucy's medical expenses. I can not tell you how much these ladies blessed our lives! Not only our family but countless other families that came that day looking for a "bargain". They worked so hard and for so LONG to make the yard sale a success! A couple of the ladies didn't even sleep the night before! We will never forget what they did for us!
Everything you see was donated by our church family!!! We are so blessed!!
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Yard Sales are hard work!
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| From Lucy 6 to 7 months |
In the end, the Lord blessed us with $2100 from a "donation only" yard sale! The Lord is so so good! (This ended up being almost the exact amount needed to fund the trip we took to the 2012 OI convention!!! That trip was invaluable to us!!! More about that later!)
The next day, Sunday, April 28th. We had Lucy's baby dedication AND finally got to have Ella's Birthday party! We had all of the family come into town for the dedication...so... two birds, one stone!
Playing Pee pie with Poppy before church.
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Wonder if he was nervous? lol
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| From Lucy 6 to 7 months |
Then,....on to "Homey Park" as Ella calls Homewood Park....for THE BEST BIRTHDAY PARTY EVER!! I have to admit, we have only thrown 4, but this one was by far the best!
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Her Cake was GORGEOUS!!!!! Made by Marilyn Montgomery!
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Her first "Big Girl" Bike....from mommy and Daddy!
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Finally, Kite Flying!!! There wasn't much wind, but they actually flew!!
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
April 30th We noticed that Ella didn't eat anything at her party and her cheeks were really flushed, but we thought she was just over-heated. The day after the party, she complained that her tummy was hurting and she was started having some tummy troubles.
At home with daddy. This is how daddy pulls hair back.
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| From Lucy 6 to 7 months |
Daddy played play-doh...
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| From Lucy 6 to 7 months |
And even made jewelry!! WTG Daddy!
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| From Lucy 6 to 7 months |
Daddy and Lulu playing. The next day, Ella was completely fine. I guess all she needed was a little TLC from daddy.
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| From Lucy 6 to 7 months |
LuLu at school! They take such good care of her!!
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| From Lucy 6 to 7 months |
From May 2nd to May 6th. Me, mom, and Ella took a girls vacation. I started to post about it here because it falls within this month but it was waaaaaay too long for an already ridiculously long post. You can read about it here.
Jason texted me their school pictures while we were gone. I am impressed!! These are great pictures!
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Look at this cutie I came home to! However, she was pretty fussy and uncomfortable....we thought that maybe she had broken a rib. The endocrinologist appointment couldn't come soon enough.
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| From Lucy 6 to 7 months |
On May the 9th, we had our long awaited appointment with Dr. Latif. His name is actually Hussien Abdul-latif. He is from Jordan..... and he has a southern accent. We instantly loved him! We talked about Lucy's history, how we came to her diagnosis, and about the Dr.s we had seen in Delaware. He examined Lucy and asked me what we wanted him to do for her. (The only way for OI children to receive Pamidronate treatments is to go through endocrinology and since she had not qualified for the Pamidronate treatment yet (3 long bones or 1 compression fracture within a year), there was nothing really for him to do for her.) I told him that since it is so difficult to become his patient, we didn't want to wait until she qualified to get in to see him. He said...."Well, she is gorgeous....Look at those eyes! If she ever needs bis-phosphates (Pamidronate) call me and I will happy to collaborate with your Dr.s in Delaware. Good to meet y'all!" (You probably cant hear the Jordanian/Southern accent in your head like I can while typing this, but the man really is adorable). I hope he doesn't somehow read this, he may not appreciate "adorable"...ha ha! A Dr. that gives hugs is worth his weight in gold! He clearly loves his patients. Its easy to understand once you meet him why there is a year wait to see him.
I asked him to take an x-ray because she was acting like she had a broken rib. He agreed and told me that he would personally call me as soon as he read the x-ray!
A few hours later, he called and said that her x-ray looked great and he couldn't see any fractures....hmm. OK. I thanked him and told him that was wonderful news, but I'm pretty good at tell when my baby is in pain. So I knew something was going on.
The next day we had our Bell Center appointment.On the way....Jason heard something wet hit the window....if your squeamish...don't look.
Ugh! Well, she still looks happy. So, there could be several explanations...her tummy is upset (although this has NEVER happened before to this magnitude), reflux, or pain. Needless to say, very little PT took place and Lucy came home naked.
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| From Lucy 6 to 7 months |
Friday, May 11th, we had Lucy's "6 month" pictures made with Photography by Michelle, aka Michelle Schnader.
Her pictures are breathtaking! I love them all! You can't even tell that it was utter chaos, with lots of reflux, wardrobe changes, hair malfunctions, boo-boo's, potty breaks, and ants!
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
The next day, Saturday May 12th, Jason took Ella to a birthday party at Chucky Cheese for her sweet school friend, Reese!! It was Ella's first Chucky Cheese experience.
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Afterward, Jason took her to his office to make a Mother's Day Card for me :) Very creative daddy.
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| From Lucy 6 to 7 months |
Sunday, the 13th was MOTHER'S Day! Yay! I got breakfast in bed....
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| From Lucy 6 to 7 months |
A Card...and a GIFT!!....
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| From Lucy 6 to 7 months |
Later that day, we went to Tuscaloosa to visit my mom. We had a wonderful visit and afterwards, Ella was cleaning up and putting all of the toys in the toy box (which is actually an old cedar chest), and the lid fell on her finger. I was in another room and I heard the lid slam, then I heard my mom scream at Ella and I thought she was in trouble for something. Then.....I heard her crying.
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
Diagnosis....Broken ring finger aka crush injury. Ouch! She has to wear her splint for 3 weeks.
Its so different taking a non-OI child to the Dr. because of a break. They know I have a OI child, yet they set us up with specialists, for a FINGER! Anyway, If I didn't keep the appointment and then later she couldn't bend her finger, I would regret it. So, off we go to Children's hospital so another Dr. can say, "Well, looks like she broke her finger". Yep.
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| From Lucy 6 to 7 months |
Tuesday, May 15th, 2012
New Milestone Alert - Lucy started making consonant sounds - IE. Bah,Bah,Bah!!!
Wednesday May 16th, 2012
Today was Lucy's appointment to have her helmet adjusted at Hanger - Lucy's head has changed from 10mm of deformity to 4mm!! She only has to wear it 3 more weeks!!! Woo Hoo!
Thursday May 17th, 2012
Bell Center appointment for therapy.
Later that night when we took Lucy's helmet off..... she had a huge swollen red place on the side of her head. THAT IS IT!! We are done! I think she can live with 4mm of deformity, which is well below the recommended amount for a helmet. Happy 7 months baby....no more helmet for you!!
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| From Lucy 6 to 7 months |
Milestones and other notables:
- Got her Helmet! and finished wearing her helmet ALL in 3 WEEKS!! (10mm to 4mm)
- Really finding her voice and “belly laughing”.
- Had an ear infection on the day she turned 6 months.
- Sat up without support – with her helmet on!! Propped on her arms. (4/21/12).
- Started Prilosec – working great!!!
- Started scooting backwards.
- Another stomach virus
- Teething, but still no teeth.
- 5/29/12 Lucy’s baby dedication.
- Another Ear infection.
- Compression FX’s.
- Rocking back and forwards on hands and knees. She wants to go forward so bad.
- Stopped taking Prilosec went back to Zantac – 5-13-12.
- Possibly lactose intolerant? Fed Mac n Cheese baby food and projectile vomited, trying Prosobee (soy formula) and feeding less. Soy didn’t help but feeding less did!
- Started saying consonant sounds ie….bah.bah.bah.bah 5-15-12
7 MONTHS!!!
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| From Lucy 6 to 7 months |
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| From Lucy 6 to 7 months |
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