Ok - we got through the 4th month and Lucy had her 4 month checkup on Feb. 14th. She was 10lbs 11oz and 23 in long (@ 5th percentile). Her head circumfrence was 15in. (basically the 0 percentile). Our pediatrician was trying to check her ears, which is a big ordeal when you cant turn your neck. He noticed that her skull had flattened on the right side behind her ear since she wasnt looking to the left and it was causing her R ear to be farther forward than her L. He mentioned that we might be interested in looking into a helmet for plagiocephaly. He said that the flatness might be throwing off the measurement of the head circumference, but even so, it was something we needed to watch, but not worry about right now. I asked him what I should be concerned about if her head was too small. He said that her brain might not have enough room to grow and she could have to have surgery to re-open her suture lines. O-K...well he said not to worry about it. She got her shots and I requested referral to the State Early Intervention program. We got out of there. Im so tired of Doctors.
I was super stressed about all of the radiation exposure that I had allowed and even more was being requested. The thought of doing another CT on my baby made me sick, but I wanted to do what ever she needed. One afternoon at work....I just decided to call Dr. Mckenzie's office (world-renowned orthopedist and spinal fusion specialist) in Delaware and tell them about Lucy and ask them if they would look at her records. They called me back! They asked me to send them her records. I OVERNIGHTED THEM.
Two days later they called me back agian! They wanted to know if I could bring her to them on March the 1st! Just two weeks away! Colleen, Dr. Mckenzie's assistant, also recommended that we see Genetics when we came. I agreed. Our geneticist wasn't coming up with anything fast, we hadn't heard anything from the collegues in Europe...why not get a few more brilliant minds to look at her. The Geneticist she scheduled us to see, Dr. Micheal Bober, thought that Lucy may have Jansen's Metaphyseal Dysplasia, a VERY rare dysplsia based on her x-rays. He asked us to get some blood tests drawn before we came. I immediately went in to hyper-drive, when I feel like we are moving on something GOOD....I move into EXTREME efficiency! I made travel arrangements, called the Ronald McDonald House in Delaware, rented a car, started researching traveling with a baby and ordering things I thought we needed to get from HERE to THERE. Its a gift really... Jason would probably consider it a curse, because whatever I cant get done, I delegate...lol.
On the 16th we had our Bell Center Eval and met our team! Awesome! We couldn't wait to get started with therapy!
We had an appt scheduled for the 20th to see our Neurosurgeon. Since learning about the plan to do monthly CT's, I had called an requested that they just do x-rays and if they looked bad, THEN do the CT. They agreed but told me they would do the CT if they couldn't get a good enough image on x-ray. I called and cancelled the appt. since we were going to Delaware so soon. Lucy wasn't having symptoms of cord compression and we were leaving for Delaware in less than 2 weeks. Until this moment...I hadn't defied a Dr. before, especially over something so important. I was sick of feeling so guilty all the time. I actually felt like we were making the right decision for once.
Saturday, February the 18th, we headed to Hunstville for my nephew's birthday party! It was a skating party and Ella Grace had never skated before and she was SO excited!
Here she is with the birthday boy, Cooper!
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| From Lucy 4 to 5 months |
Getting her skates on with her cousin, Emma.
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
The next day we enjoyed the Home and Garden show. (Hey, It was freezing outside and we needed something to do.)
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| From Lucy 4 to 5 months |
That Monday, the 20th, when we would have been going to our Neuro appt, instead I took Lucy to get the bloodwork drawn for the Geneticist in Delaware!
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
That night we gave her, her 1st rice cereal. (so what, right?) She had TONS of stomach pain getting adjusted to creal. We are scared to death to travel with her.
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| From Lucy 4 to 5 months |
The 21st was our 1st day at the Bell Center! We LOVE our team! We went back agian the 23rd. She was already doing so well with her goals!
That weekend, some friends of ours, Bevin and Adam Tomlin, gave us tickets to the Guild Gala (Silent Auction) benefitting the Bell Center!! It was a black tie event and it was SO FUN to get dressed up and have a night out without kids!! My mom came and babysat and poor Lucy had a terrible night with her tummy. I dont think my mom will ever come back agian...lol.
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| From Lucy 4 to 5 months |
Bevin actually organized a silent auction for some friends of ours, Steve and Julie Boyd, who are adopting a PRECIOUS little girl from China. So I made these this week for the auction. I am so excited to get to help bring Ruthie Grace home!!
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
I posted this update on Caring Bridge the day before we left for Wilmington, Delaware and the Alfred I. Dupont Hospital for Children!
Update
Written Feb 28, 2012 11:27am by Jennifer Slye
A lot has gone on in the last two weeks, so I thought I would post a little status update and ask for some specific prayer requests.
• Feb 14th - Lucy had her 4 month check-up. She remains in the 5th percentile for height and weight, but she is growing proportionately, and that is a huge praise!
•She had a pulmonary appt. The Dr. suggested a sleep study. (Which was horrible!) But the results were normal, huge praise! Also during that appt, the dr. said that her lungs looked "streaky" on x-ray, and ordered a barium swallow x-ray series. Our pediatrician agreed with me to cancel that study because it was unneccesary radiation exposure and we agreed thicken her formula in case she is aspirating into her lungs and recheck in a month.
•We cancelled her Neurology appt. Feb 20th, because they were requesting a 2nd CT, which has 100 times more radiation than an x-ray (and she has already had 1 CT and nearly 50 x-rays), and because we are leaving for Delaware tomorrow to see Dr. Mackenzie and we dont want to duplicate procedures on her.
•She started the Bell Center and is doing fantastic! She has had no trouble meeting the goals they have set for her!
•After a week of thickening her formula and trying to encourage her to eat rice cereal from a spoon (which she is not having AT ALL.) SHE IS MISERABLE. Her tummy is killing her, she is constipated, and she is not sleeping well. Jason and I decided to change her formula back to what was working. She is having trouble readjusting, she is having a lot of gas pains, and you can tell that she is in a lot of pain most of the time. We dont think it is bone related because she settles down at times, but she is so uncomfortable. She whimpers in her sleep. After contacting the pediatrician he suggests putting her through the barium swallow series after all. She is also teething which causes her to drool alot! It also fills her stomach and causes her to spit up a lot or feel full and not eat.
•She has been congested for nearly 3 weeks without a fever, so we cant give her anything to get her better.
•She will be evaluated for a helmet the week after we return from Delaware. She has plagiocephaly, which is flatness (specifically on the right side) of her skull. From her preferring to look to the right. So much so, that her right ear is further forward than her left ear. The helmet will help to round her head back out.
Specific prayer requests -
1. That her "streaky" lungs is nothing more than: a bad x-ray. This is really a big deal. She has a lot of pain from changing her diet around. If she is aspirating, they are going to want to thicken her formula even more and put her on a stool softener. This is MORE medicine, and seems unnecessary to me. She is already on Zantac for reflux.
2. That she is able to travel comfortably without tummy pain or fever.
3. For wise doctors, that can diagnos her with a minimal number of invasive procedures and radiation exposure.
4. MOST IMPORTANTLY - that her kyphosis has not progressed and her spinal cord is not compressed. WE NEED TIME! We want to keep her out of a cervical collar but realize there is a very real possibility that she will be in one when we come home.
5. That the Ronald McDonald House will have a room for us.
I know that we have people that are reading and then praying for Lucy! We appreciate you more than we can ever truly express. We need your prayers and we can feel them. They mean everything to us and they are so important!
Thank you so much for loving us enough to pray for us.
We left the next day from Birmingham International, stopped over in Charlotte, NC. then finally arrived in Philadelphia, PA around lunch. Lucy did great.
Our first update from DE:
Greetings from Delaware!!!
Written Mar 1, 2012 6:03pm by Jennifer Slye
I dont even know where to start... This has been the most amazing trip!! God is so good! Let me tell you exactly what HE has DONE!!! We called the Ronald McDonald house of Delaware the night before we left, to request a room. They told us then that they did not have any rooms available, and we would have to check back after we arrived in Philadelphia. (Oh NO!) Well, we would have to worry about that later.
Both flights went off without a hitch, Lucy never made a peep! She didn't have any tummy trouble and she slept most of time! Her bottles were timed perfectly. Only by the grace of God, had I called our pediatrician before we left, because Lucy had been congested and having tummy trouble and I wanted to make sure she was OK to travel. He recommended that we go ahead and put her on an antibiotic before we left. She got worse but now she is doing much better!
We called The RMH as soon as we landed in Philadelphia and they told us that they had a room for us! (A little faith test...whew! Thank you LORD!)
Today was her first appointment. The one we've been waiting for with the AMAZING Dr. Mackenzie. He did not dissapoint. When we signed in we were told that Dr. M wanted to get some x-rays. The x-ray techs were so efficient! They only took 5 x-rays!! Then we were taken to a room to wait for the dr. The nurse practitioner, Coleen, came in first and looked her over. She asked us some questions about our history and then left to get the Dr. Dr. Mackenzie came into the room and the 1st thing he said was: "Looks like youv'e got a bunch of paranoid Dr's taking care of Lucy" (probably paranoid parents too, but he was kind enough not to say it). He looked at Lucy all over and then he said: "You know your daughter's not a little person, she's normal height" (What did you say? Could you repeat that please?) Then he said that Lucy didn't need a helmet! That her head would be fine if she spent more time on her tummy! He said that she didn't need a collar!!! (Can I get a Hallelujah?) He said that her Kyphosis had gone from 53- 55 degrees last month to 50 degrees this month (sounds like an improvement to me!). He commented that the MRI that we had done last month was taken in the worst position for her neck and her spinal cord STILL had plenty of room! He said that we would still need to be careful with her, but that we need to be careful about her neck going forward not BACKWARDS! Everything that we have ever told any of Lucy's caregivers was ALL WRONG!
He said she definitely did not have Metatropic dysplasia or Jansen's Metaphyseal dysplasia. We joked that she had Lucy syndrome, but he said seriously, she may not have any named syndrome. He believes that she has a metabolic problem or possibly that there was a problem with calcium crossing the placenta (most of you know about all we went through to stay pregnant...I was on lots of drugs). He believes there is a chance that they could have played a role in her bone development. No dr. has ever even considered that!!
That is where the geneticist will come in tomorrow! We are really excited because Dr. Bober specializes, not only in Dysplasia's, but also in bone density and metabolic problems!! Back to today's appt., Dr. M noticed that she had had a scapula (shoulder blade) fracture when she had the other fractures (no one had noticed that before.) Finally, he said that he didn't need to see her agian for 4 to 6 MONTHS!!! PRAISE THE LORD!! We still have tomorrow's appt, and some things could change, but for now, things couldn't get better.
Every penny that it took to get us here has been sooo worth it!! When I think about all of the testing we would have put her through every month if we had not come here, makes me a little sick. I told Jason when we got here, the best thing that they could tell us was, "Why on earth did you come all the way up here for?" When Dr. M left the room today, He turned and said "Sorry I couldn't be of more help." I said, "Do you really think you didn't help us?!" Wow! I just want to take a moment and thank everyone that made this trip possible for us! I feel like Lucy's future has just gotten so bright! I spoke to our pastor, Joel, on the phone the other day and said that he believed that Lucy's future was so bright, I told him that I didnt know but that I knew God had a plan. I hung up the phone and felt so guilty for saying that. I know God has a plan!! I also know that he is answering our/your prayers and her future is BRIGHT!! Ok, I have to go! Cant wait to report more tommorrow!!
Hehe... I wonder how upset Jason will be with me for posting this picture (our room at the Ronald McDonald House, and Lucy's HUGE medical Binder):
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
Written Mar 5, 2012 2:27pm by Jennifer Slye
Sorry I'm just now updating about this appt. I'm just now getting a chance to slow down. Our appt. with Dr. Bober was wonderful! It wasn't all good news, but we felt confident that he was VERY knowledgeable and thorough. He said that even though Lucy is normal proportionately, she is still at the very bottom of the growth chart and could still be a little person. To that I say, SO WHAT! We accepted that a long time ago.
My concerns are:
1. fractures
2. Kyphosis (her spine at her neck)
3. Her bones bowing or causing her pain because of their shape.
He said that her degree of ossification is normal now and that he would not expect fracturing. This is HUGE!! This causes him to draw the conclusion that it was possibly a placental insufficiency that caused the delay and now that she is no longer connected to me, her body processes are working to catch up. But he doesn't know of any metabolic problem or gene mutation that would cause the specific problems that she has. He going to be doing some research on me (basically), to figure out if my problems somehow could have caused Lucy's.
He didn't have a lot to say about her spine, aside from, Dr. Mackenzie was the best, and if she ever needed surgery, he could do it. Its Dr. Bober's job to connect the pieces of the puzzle and figure out what is causing her spine to curve, and what to expect. Right now he doesn't know the answer to either.
He said that she could have some bowing of her legs. But, if it ever caused her pain it could be fixed. He said that he had never met a child with bones the shape of Lucy's that did not walk! She may be delayed, but she will walk!! He also said that people with problems with the metaphysis of their bones generally do NOT have a lot of pain!! He also said that aside from her kyphosis, the bones of Lucy's spine looked normal!!! This is all wonderful news!!
Finally he said that there were two things we should be concerned with:
1.) Her spine, just to be careful with her and do exactly what Dr. M says to do.
2.) Her Reflux, get it under control (OK!)
Dr. Bober and Dr. Mackenzie educated us SO much! Truly, they changed everything about the way we hold her, play with her, plan her care. Everything! One of my friends wrote me today when I told her this...she said...but nothing has changed for God. He knew all along and had you all in his hands! She said it was a lesson for her, but whoa, was it EVER a lesson for me!! Reading that made me so broken. We are not alone, we are not in charge, and God WILL help us!
I have to go...I want to tell you all about our trip home and the hand of the LORD, on our journey, but I will have to wait. We are scheduled to close on the refinancing of our house in 10 minutes. We have been trying to do this for over 2 years, but the circumstances have never been in our favor. Now they are...this is not a coincidence, btw. We will save $400 a month by refinancing. Clearly the Lord is authoring our steps.
I also wanted to point out...that the Lord answered every single one of our prayer requests! The first one...about the streaky lungs..was answered when they took a chest x-ray and it showed CLEAR lungs. :)
I can now tell you that the night that we were leaving Philly...our connecting flight was in Chicago. There were terrible storms there and in Birmingham. We were at the airport in plenty of time to catch our fight but it was delayed twice. Each time for over an hour. We were afraid that once we made it to Chicago that we would be delayed agian getting to Birmingham. If there was a flight left at all. Jason took Lucy to the customer service desk just so they could get up and walk around. I sat with our stuff at the gate. Apparently, a hungry, tired baby = fast track to the front of the line! The workers there were amazing! They worked for nearly two hours to get our flights rescheduled. Nearly everyone in the airport was trying to reschedule and a lady sat on hold for us with the airline for 40 minutes! Once she got through she told us that there was no way that she could get us home that night and did we have a place to stay? Oh, my gosh. We called the Ronald McDonald House in Delaware and told them what was happening. They hired a van to drive to PA and get US and take us back to the DE! Look its only a 30 minute drive but still it was an amazing thing for them to do. Its a non-profit orginazation and it was way after normal operating hours. Then the Customer service agent at the airline had to escalate a request to get our luggage off the plane, because by then, it was boarding for Chicago. Its actually a big deal to get anyone to go underneath an airplane that is about to take off and get ANYTHING off. We just knew all of our stuff was about to fly to Chicago without us. Including formula, sleep positioner, monitor, medical binder, etc. The guy at the gate came through for us at the 11th hour....I mean just as they were closing the doors to pull off! There is no way to explain all of the ways people went out of their way for us....in a stressfull situation...than the hand of God!
The next morning RMH arranged for us to be returned to the airport and we travelled smoothly home.
That may sound like a story of adversity, but let me assure you it is not. Jason and I were totally at peace during it ALL. I have said it many times before, but it is all due to the prayers being said on our behalf! All glory to God!!
While we were gone, Ella got to enjoy a rare treat....a visit from her cousins, Cooper and Emma!
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| From Lucy 4 to 5 months |
Its so good to be home! Check out the look they are both giving me !?! Can we get a little privacy here?
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| From Lucy 4 to 5 months |
We met with the State Early Intervention program and they will be coming to Lucy's daycare to see her once a month! FREE! YAY! We headed back to the Bell Center this week, they are still working with her on basic developmental milestones while still being gentle with her but we get to try some TUMMY TIME now! We weren't as afraid to handle LuLu anymore so we let her try out her exersaucer. There was a very brief moment of excitement:
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| From Lucy 4 to 5 months |
We got a call from the geneticist in Delaware. Lucy's Metatropic Dysplasia results and her vitamin D panel all came back normal. We kind of knew that the Metatropic Dysplasia was a long shot, but the vitamin D panel rules out some metabolic disorders. Dr. Bober now feels 100% positive that she DOES NOT have a metabolic problem because her lab came back perfect. We really dont know anything new, but they are going to place Lucy's records on a private (listserve) for Specialists around the world to look at and see if anyone has any ideas.
Nothing lost, nothing gained I guess. She's feeling a ton better already! She can probably feel how much we have relaxed.:
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
On the Saturday the 10th, it was mild enough outside to go to the PARK!!(Those are french fries Ella has stuffed in Jason's mouth):
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
We love the huggabebe!! Lucy got to SWING!!
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
Ella was feeling a little camera shy:
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| From Lucy 4 to 5 months |
There's my beautiful girl!:
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| From Lucy 4 to 5 months |
Worn completely out:
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
I love this video, it cracks me up everytime I watch it! "Mom, Im a monster!"...lol.
Sisters:
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| From Lucy 4 to 5 months |
March the 13th!! Ella donated to Pantene Gorgeous Lengths!! You only have to have 8 inches to donate! Im so proud of her! Of course every bald man she has seen since then, she has asked if they needed a little boy to donate some hair for them. I guess she figures her hair could only go to a girl!
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
Back to take pics in the glowing bathroom, since we aren't afraid to touch her anymore. It may look like she is putting weight on her legs here, but really it was only like milliseconds. (Knowing what we know now (she's 8 months) I say this alot. Now that we know she has OI, writing about how we were feeling and what we were doing then is hard. I wish I had wrote it down then. Now it seems like we were really careless with her, but we just DIDN'T KNOW):
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
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| From Lucy 4 to 5 months |
Milestones:
- 1st time to fly
- pulled up from laying to sitting while holding our fingers (therapists say not to do that anymore, though)
- Shrieks
- Tried rice ceral and baby food (doesn't like it at all)
- Lot's of Tummy Time
- slept through the night once
- @18 weeks she found her toes
- rolls from side to side, flips over easily if on her tummy, needs a little nudge if on her back
- reflux is pretty bad
- tried exersaucer
- Happy all the time!
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| From Lucy 4 to 5 months |
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