Back to normal

It has been a while since my last update on Evelyn. She had been doing really great after her leg fractures (July-Aug). She was able to return to her normal activities gradually.

Dr Mary Peterson-Suri is one of  OI parent in the US. She had volunteerily formed a charity group called "hear-to'heart" that help in sourcing, collecting and sending special need equipment around the world. I requested a walker for Evelyn about a month ago before her leg fratures. To our surprise... the walker arrived just on time after her fracture recovery.  This walker helped Evelyn walking around the house.  A big thanks to Dr Mary and the OI Parents who have been so supportive and helpful along our OI journey. Look at her, walking with confidence!

Apart from the medical walker, we have also sourced some fun toys that helped her moving around.


She loves her stroller

There are also few toys to be acted as her mobility tools around the house.



Playing kitchen utensils using her toy giraffe as a mobility tool

Evelyn had progressed really well over the last few months. She was able to climb staircase

Great improvement!!!

If you work hard on something, great thing will happen" - Neal McDonough

Evelyn weighed at 27mo : 7.6kg, 77cm

First leg fractures

Right leg fractures - long cast for 3 weeks

We are so happy seeing Evelyn's latest milestones - she can walk with our one hand support (was 2 hand support, or with furniture support). Unfortunately, the happy moment do not last longer.

While we were celebrating her new milestones Evelyn fell down from standing position and broke her right leg. She sat on floor with her right leg stiffed and cried abnormally. When we tried to move her leg she did not want us to touch on it. Were were totally new in handling in leg fracture. We rested her broken right leg on a wooden board before heading to the pediatric emergency. An xray was ordered to see how the fractures look like. It was a  heartbroken news again - she has had 2 bone fractures.






Bruise around fracture area



Right : Displaced distal tibia   Left : Displaced mid shaft fibula


On the 6 Aug, the long cast had been removed, but her leg was still swollen. She was still in pain and cant bear any weight either. She wanted to get back to her mobility but it was not easy as before.

We pray hard for her speedy recovery.

The bravest sight in the world is to see a great man struggling against adversity 

Evelyn weighed at 26 mo : 7.3kg, 77cm

New milestones

Evelyn has tremendously progressing since she started pam treatment from 19 months old. Her confidence level has gradually increasing. She has been bearing weight with her legs and she can stand/ walk with support since then. 



23mo - First introduce a walker, only took 2 steps with it

24mo - New mobility toy. She loves it so much!

25 mo - walking with support

25 mo - standing with a little leaning support

25 mo - walking with chair support

This may means nothing to an average child, but it meant a lot to us in a this rare journey. Evelyn has came a long way in achieving those milestones. Although it was a slow long process but she did it finally. We were in tears seeing her walk with the little chair.

We celebrated everyday for her milestones achievement and appreciate every single fracture-free day.

"Never give up on what you really want to do. The person with big dreams is more powerful than one with all the facts".

Evelyn weighed at 25 mo : 7.2kg, 76cm

Evelyn is 2

Time has passed by so quick. I cant believe that Evelyn is 2 now.

The past 2 years was terrified, from the moment the pediatrician told us her deformities, followed by her OI diagnosis, then the knowledge on how to care OI baby, her developmental delay, the frustration we have dealt with doctors, therapist, orthotics, specialist, physical therapy (PT) training on our own, pam drug treatment/ doctor appointments routine, and many more. OI is really a scary thing. There are lots of uncertainties so we really don’t know what to expect next. Her scoliosis (spine curve) is the most scary diagnosis, from zero degree at birth to 38 degree at 18 months old in S curve, and yet the doctor said it would be a progressive curve - this is something bad to hear. We have no other option but to live with it and accept the way it is.

We were told that she would never walk - but just recently (22mo), Evelyn started to cruise furniture with support, pull to stand with support, stand/ walk with support. Her daily PT is something that we cant be ignored, because every little effort do helps. We are hoping that she keeps progressing and gets stronger each day in meeting her major milestones. A good quote from Master Zheng Yan "Never under-estimate yourself, because human have unlimited potential". We are proud of her learning attitude, shes love learning and keeps learning everyday. She discovered fun in learning. We truly believe that she would do better in her path with her own way.

To Evelyn :" On the 23th May 2011, you enter into our world and our live changed forever..... You teach us to be strong, be patient, be brave, be happy, be positive, be gentle, be calm, be broad-minded, be courage, be energetic, be loving, live life to the fullest, and more importantly - appreciate small little thing in life. Your change to us is just countless, and we are what we are now to be a better person". WE LOVE YOU FOREVER!!!

We celebrated her birthday 2 weeks earlier with my family together with mother's day. It was a great party, we enjoyed ourselves very much.

Look at her birthday cake & presents - She was excited!!!

Birthday party with her girly cousins

Here is a video clip I created for her to recap from birth to 2. Enjoy!

Evelyn weighed at 24mo : 6.95kg, 75cm




Backlog journals - Scoliosis



 

Front view of Evelyn's leaning to her left



Human spine made up of vertebrae, a normal vertebrae is in a cube shape, There are 7 cervical vertebrae (C1 to C7), 12 thoracic vertebrae (T1 to T12), and each connects to the 12 pairs of ribs. The lower spine made up of 5 vertebraes called lumbar spine (L1 to L5). So when all cube shape vertebrade line up straight it becomes a straight spine at front/ back view. One of reason for scoliosis associated with OI developed is because of vertebrae loosen liagaments (means the vertebrae in between is loosen os they cant connect firmly to each other).  Evelyn has 10 triangle-shape vertebraes (T1 to T8), (L1 to L2)  that made her spine cant stand straight. Her upper spine curve to the right made the right ribs twisted to right up; the lower spine curve to the left made the left ribs twisted to left down. It is a very complicated S curve. We are hoping that pam drug treatment could help to strengthen the triangle-shape vertebrae so it would not get collapsed further.

Evelyn tends to lean her body to left side due to the twisted right up ribs, and twisted left down ribs. She received her back brace support since 20 months old. .  The brace is to support her body posture so that she will have a straight body and to avoid leaning to either side. It needs to be wore 24/7 no matter what position she is in, ie: sitting, standing, walking, sleeping.

Evelyn on her brace, with this brace she cant really move her body in sitting posture, so we let her stand with support



Back view of Evelyn's spine curve, upper T1 to T8 twisted to right up resulting the right shoulder to be uneven, lower lumbar L1 to L2 twisted to left down.



Once Scoliosis associated with OI started to develop, it will not be straighten by itself. A mild curve can be corrected through brace or pam treatment or therapy. A curve > 30 degree needs to be monitored closely; it is highly likely the curve will progress rapidly. The brace is not for spine correction, but to help to prevent her curve progression. For curve > 50 degree, surgery maybe required if the internal organs such as lungs and heart are affected by its function.

Evelyn had 37 upper degree curve at 18 mo. They had never seen this bad curve at such a young OI toddler. Her lower spine curve was less than 10 degree, we have been praying for the lower ones to stop progressing.

almost meal time

"Happiness is to stop worrying things beyond our control"

 

Evelyn weighed at 22mo : 6.8kg, 75cm





Backlog journals - First PAM treatment

The geneticist had finally approved Pam drug treatment after E's heavy spinal compression fractures. They initially used the term "Possible OI", and now they can confirmed it is a "real OI". At least we dont have to travel overseas for this treatment like what we have planned earlier. So Evelyn received her first pam drug treatment at 19 months old.

Pamidronate is given by a drip (infusion) into a vein through a fine tube called a cannula.  The infusion is given over 3 to 4 hours. After the infusion, the doctor will monitor and check if E has any side effects such as "flu like" symptoms, or fever. Usually baby will get these side effects on their first treatment. We were lucky that Evelyn had been doing great during & after several hours of the infusion. However, we still need to stay overnight for close monitoring. Evelyn discharged the next day without any side effects still. Woo hoo….



Evelyn sleep throughout the 4 hours pamidronate infusion



There are 2 tests to be monitored yearly along with the pam drug treatment:-

1) DEXA scan to check her bone mineral density. This is to monitor the progression of her bone density after the treatment received.

2) Kidney ultrasound to check if her kidneys are normal, because a long term drug treatment will cause to kidney stones.

The researchers proved that children who received this treatment have made a remarkable improvement in quality of life. Many of the children gained greater bone density, reported reduced bone pain, gained mobility, and had fewer fractures during the treatment.

Evelyn can bear weight at 20m - still shaking her legs

We just love the pam treatment. Evelyn had gained so much strength after her first treatment. She can bear weight at 20mo. Her appetite had improved gradually too. Her weight stop at 6.2kg over the past 6 months (15mo to 21mo), she gained 0.5kg to 6.8kg at 22mo. she was still far behind her peers. We cant force-feed her. Severe OI children have tiny and fragile bones and poor muscle tones so the expectation on their weight & height are totally different to the normal growth chart. In OI world, they would not look at the "normal" chart, instead they said "Let them grow at their own pace".

"No matter what you're going through, there's a light at the end of the tunnel and it may seem hard to get to it but you can do it and just keep working towards it and you'll find the positive side of things". - Demi Lovato

Evelyn weighed at 22 months old : 6.8kg, 74cm

Backlog journals - First fracture

Evelyn with her grandma

Last year Nov 23, at her 18 months old. Evelyn fell off the high bed and broke her 6 spine vertebrae. She has had 6 compression fractures at T5 to T8, L1 to L2.

It was Friday evening at 6.30pm. She was extremely tired after her full day nursery. As usual, we let her sleep in our 2.5 feet bed not knowing she will awake in the middle of her sleep and scoot around the bed.While Francis and I were watching TV in the living room, we heard a big scream and abnormal crying from the bedroom. We quickly ran into our bedroom and noticed she was lying her back on the ceramic floor. She was stiffed in that position for a long while. The first thing in my head was she must have broken her skull or spine or legs !!! Oh my god! How can we leave her alone in the bedroom. I tried to carry her with my gentle hands, unfortunately she had cried even louder & abnormally. We quickly packed her stuffs and went to emergency have her checked. The doctors checked her whole body to see if she has any swollen or bruise part, because those are fracture signs. She didn’t have any of those. So They have ordered a skull xray but see no fractures so they allowed us to go home right away.

That night she hardly sleep, she cried throughout the night. She cant move her limbs or body, her whole body still stiffed like a wood. She can only lie on her back. All her movements were very slow and gentle. I remember the OI Parents forum said rub her with hot/ cold pack will help to release her pain. So that whole night we were busy with the rubbing and caring her.We played her favourite songs and cuddle her to comfort her. 3days later, she can sit up abit but her body and legs were still stiff.

 

The OI Parents said she must have broken her spine. So a week later we went back to emergency for spine xray. It was confirmed that she has had 6 compression fractures at her spine vertebrae - T5 to T8, L1 to L2. No cast or brace can be prescribed for her but painkiller and more lying on back rest. The spine doctor called for seeing them in 2 months time.

It took over a month's time to heal. Evelyn was able to get back to her routine movement and mobility. However, the fall has made a remarkable curve to her spine. That's why I called it the most "scary" incident ever. We should not underestimate her mobility ability, that she can scoot freely not long ago.

Evelyn is such a fighter. I know she were in pain but she still smiling while lying on her back. She is the strongest and brave girl ever! We love her so much! 

 "Some people think that to be strong is to never feel pain. But in reality, the strongest people are the ones who feel it, understand it, and accept it... "

Evelyn weighed at 18 months old : 5.9kg, 71cm

Backlog journals - 15m to 17m

15 months old

Our fighting for starting pam with the geneticist still not being approved. We have seen spine doctor this month, her upper curve had progressed to 33 degree. The comments from the OI Parents forum was - if Evelyn started the pam drug treatment earlier she would not have this curve at that age. She would have been a moderate type, and not severe. We were super sad to learn this.  I have no idea why Malaysia has such a rule to delay the drug treatment given that the study and research have showed the positive side of the drug. In US, an OI baby started the drug at 3 months old or earlier right after the OI diagnosis. I was truly mad with the doctor here, so I have started to look for overseas help on pam drug treatment.

They still said nothing can be done, she was too young for surgery, so will "watch & wait". The only thing we can do is to watch her posture, do not let her lead to one side, this will make the curve progress badly. So we have came out an idea with sofa as her table and cushion as her chair so she can sit on them with body straight. She loves them very much.

However, when she sits on floor to play freely, we have to watch her posture and never let her sit more than 30 min. This month, Evelyn started to scoot around to reach toys. Her movement always start backward, we are fine with this as long as she keep progressing.

16 months old

Wow, cant believe that we have came a long way since her birth. Evelyn had free of sick for the past 3 months from July-Sept 12. We really deserved a celebration and break. So I booked a vacation to Terengganu beach. This was the first family vacation. It is 5 hours drive from KL, all we have in our mind was the challenge drive as Evelyn had never travelled such a long journey. We were lucky that Evelyn didn't make much noise on the journey to Terengganu. The beach was quiet with no crowd. She enjoyed the beach; the wind; the sand; more importantly, the pool. We have had a good time there.

Just a week after our vacation, Evelyn suffered for flu and cough again. She has had a very dry cough started about a week ago. We brough her to Ped emergency again. The doctors were quite impressed with her condition that her immune system had improved so much. Based on her past sick history, she would have cough badly till suction or admission for pnuemonia.  

Another proud moment this month!!! Evelyn started to sit up by herself from tummy.

17 months old

Evelyn switch from home pool to the big outdoor ones. She had been constantly gainning muscles and core strength. She started to buttock-scoot forward, so she could do backward and forward now. She was very happy that she finally able to do her own mobility. Still, we need to watch her movement closely to avoid fall and bone breaks. Another milestone accomplished. I have recorded each of her milestone. Her progress momentum gave us some positive hope. We have the gut feel that very soon she will be able to pull to stand. It said "have faith at everything you do, because "there is a life, there is a hope". So we have only "positive hope".

We're very proud of Evelyn's achivement. She had no pam treatment, just daily PT at home, and yet she had progressed so well. 

"The struggle you are in today is developing the strength you need for tomorrow".

Evelyn weighed at 17 months old : 6.25kg, 71cm

Backlog journals - 12m to 14m

12 months old

I have brought an indoor baby pool for her with a neck float. The OI Parents forum said water exercise is good to build muscle strength. Evelyn enjoyed splashing & kicking in the water. We can see that she had gained some strength since then.

After a few session of pool exercise, she finally able to sit independently. Another big milestone had accomplished. Unfortunately, sitting may harm to her spine. we noticed her uneven shoulder. Her right shoulder was higher than the left, that means her spine have a curve to the right.

We were referred to a spine doctor right away. Prof Kwan and team measured the curvature degree and it was exactly shown at 22 degree. The T6 vertebrae was in triangle shaped, this deformity had made the spine curve started. They said nothing can be done at the point but to "watch and wait". It needs to be monitored in every 6 months.

We celebrated her 1st birthday with her grandparents and my sister's family.

 

 

13 months

Evelyn had gained some core strength on trunk and thighs, she can push her legs while sitting in baby walker. Woo hoo….

Living with OI is like a roller coaster. There are always shock news followed by a good news. Evelyn had admitted for pnuemonia again for a week. Thank god it was not as bad as those 2 admission before. It is only viral infection with no fever. I was all well-prepared and know what to expect from the pnuemonia protocol. The antibiotic of a week had been given, they did suction, nebuliser, physio as usual. They have given some oral antibiotic after the discharge. After a week, Evelyn had fully recovered. Looks like she can go back to her pool again :)

 

14 months old

It had been almost 2 months since Evelyn started water exercise. She loves water very much. She had getting more active after the water activities. Her arms and shoulders became stronger. This month, she started to sit with both legs in cross W position with both hands on floor. We're proud of her, she is our strong and brave girl. My tears off seeing her achievement.

The genecicist suspected that Evelyn might have Cole-Carpenter Syndome (CCS) on top of OI. CCS is a very rare syndrome that manifests with bone fragility, craniosynostosis, ocular proptosis, hydrocephalus, and distinctive facial features. It represents a form of congenital brittle bones resembling osteogenesis imperfecta. Simply said - on top of OI, CCS has additional symptons such as water in brain and abnormal shape of brain, head, facial etc.

the left xray taken at 9 months, the right was taken at 13 months old with curve at 22 degree

So a brain MRI was ordered to rule out if she had the above said symptons. Good news - everything were perfect in the report. That proved to the geneticist that he was totally wrong! 

It is proven from the OI research, that it is beneficial for a baby to start pamidronate as early as possible to strengthen bones and mucles, so the child can meet their milestones earlier, improve bone mineral density so bone fracture can be prevented. They also proved that the drug is good for her spine curve too, because the drug will flow into the spine to correct the vertebrae wedge-shaped perfectly so the spine may look good. We have always discussed with the geneticist to start the pamidronate drug treatment but our request have always being rejected with the 2 reason :- 1) Evelyn is too young to take up the drug, she might have sufferred from the side effects. 2) It is a standard rules in Malaysia that the drug can only be started at the age of 2 if no fracture occur or no bone pain happened. Evelyn had no new fracture since birth, at least a good news so far.

 

Quote : "Once you replace negative thoughts with positive ones, you will start having positive results" - Willie Nelson

Evelyn weighed at 14 months old : 5.98kg, 71cm

New milestone but admission again

Evelyn had getting more active, her arms were stronger, she did tummy time for the first time at 10 months old. She can only hold it for a minute or two. Although it was a slow process but we were very much happy to see her accomplishment.

Tummy time at 10 months old for the first time

We put her in infant car seat for feeding, she loves seating on it for watching TV too. However we were not sure if that was the right posture for her at that point. It maybe harmful to her spine. She had been sick for lying down on her back at all time. So we thought sitting with this support gave her a better viewing.

Evelyn sitting in the infant car seat

At her 11 months old, she admitted to UMMC for measles. It started with fever for 10 days, then followed by rashes all around her body. We initially thought the rashes was because of medication alleegy. So we brought her to few pediatric clinic, as usual, paracetamol and antibiotic have been given but we did not see any recovery still.   On top of these, she was having a bad cough and flu too and breathing difficulty. The fever had gone up high at 38.5' celcius. We brought her to pediatrician emergency  at UMMC. The doctor advised to admit right away.

Daddy is feeding her through tube

During her 10 days stay in the hospital, she received a nebuliser and phlegm suction 6 times daily. An oral antibiotic was not useful at that point, so she required antibiotic infusion 4 times daily. Due to her breathing difficulty, she was given an oxigen tube through nose. Another tube had inserted to her throut through mouth to provide milk intake. Body temperature was being monitored closely every 3 to 4 hours. We had wiped her with wet towel on and off to keep her body hydrated to avoid high fever. Few blood and stool had been taken for bacteria and virus test. 

It broke my heart to see Evelyn in such a pain and suffering. She has had enough, with pnuemonia admission at 6 monts old, and meascle attack again at 11 months old. We prayed for her speed healing.

"Suffering becomes beautiful when anyone bears great calamities with cheerfulness, not through insensibility but though greatness of mind". -- Aristotle

Evelyn weighed at 11 months old : 4.95kg, 69cm

More on genetic and pnuemonia

Her uneven rib cage had getting more obvious, the right side of her back seemed to have a bump. We thought that might be because of her right rib fracture. We didn’t know when that happened and why the pregnancy ultrasound could not tell at all. That brought us to another queries. Did she in pain in the womb when the rib fracture happened? What caused to the fracture? Did the fracture caused to her poor weight growth in the womb?

Evelyn at 6 months old, her white part of eyes are blue

The internet research on Osteogenesis Imperfecta said people with OI will have a barrel (wide and vertical look) rib cage. Others research said the uneven rib may have indicated scoliosis (spine curve), means the congenital scoliosis (born with it). The xray done at 5 months old showed a straight spine, so that is one good news at least.

Apart from her rib and back issues, her skeleton (full body) xray also showed a bowing femurs (thigh) on both legs. These are really strange signs. She didn’t cry so we assume she was not in any pain.

Bowing of upper femurs

At her 6 months old, Evelyn admitted for pnuemonia (lung infection), she has had a very bad flu and cough. She vomited whenever she cough. During her stay in the hospital, she received a nebuliser and phlegm suction 6 times daily.

Evelyn at 6 months old, still no nect and head control

The geneticist appointment with UMMC under Prof Thong started at her 9 months old. Evelyn had been accessed all over again for OI diagnosis. A set of tests on top of the previous tests had been ordered, such as 1) DEXA to check her bone mineral density, BMD -0.145m -- this meant her bone density was extremely low and fragile. The bone will get fracture easily. 2) Neurology to check if your neoro is functioning well - normal.

At her 10 months old, Evelyn received her first physical therapy (PT) from UMMC. PT meant for those developmental delay child to learn and achieve physical movement or to maximise mobility. The appointment was set to be once a month. Her PT taught us the skill in helping her to gain head and neck control so we can did it from home. We bought an exercise ball for her to lie on it so she can have her head up, by doing this, she gain neck control.



Evelyn at 7 months old with grandma


Here are her developmental milestones record :-
5 months old - Rollover sideway (not from tummy)
8 months old - Rollover all way (tummy to back, back to tummy)
11 months old - Head & neck control, trunk control

She is happy

"Although the world is full of suffering, it is full also of the overcoming of it"  - Helen Keller

Evelyn weighed at 10 months old : 4.8kg, 60cm

Genetic news

At her 3rd pediatrician check, the doctor suspected something was not right with Evelyn. Her poor developmental growth and deformities may have indicated a genetic issue. Her milk intake was still 2oz every 2 to 3 hours, we have introduced a supplementary to boost her appetite but it's just useless. There was still a slow weight growth.  

Evelyn and her mommy at 5 months old

Evelyn is floppy

We were referred to Sime Darby Medical Centre (SDMC) to see a geneticist - Dr Choy Yew Sing. That was when and how the diagnosis process started, 1) blue sclera (white part of eyes are blue); 2) foot deformities; 3) Rib cage deformities; 4) floppy; 5) poor muscles tone; 6) poor developmental growth; 7) fontanelle still open wide (the softpart bone on top of head)' 8) small legs.

Based on all the 8 signs above, Dr Choy suspected Evelyn might have one of these genetic disorders, 1) Marfan Syndrome; 2) Osteogenesis Imperfecta (OI); 3) Ehlers Danlos Syndrome (EDS); and few more diseases with less likelihood.

So a series of tests had ordered to the diagnosis, and the results are as follows:-

1) Skeleton (full body) xray - to check all the deformities

Result : healed of the 11th right rib, means Evelyn had rib fracture in the womb before she was born

2) Eye test - to check if the lens are in the right location and the blue sclera

Result : Normal except for blue sclera

3) Hearing test - to check if her hearing is impaired

Result : Normal

4) Blood - to check if she has chromosome abnormalities

Result : Normal

5) Ultrasound on kidney - to check if her kidney is abnormal

Result : left side of kidney seemed to be swallon by 0.4cm

6) Enchocardiogram - to check if her heart is normal

Result :  her left ventricular was non compaction with preserved function (we wonder what this means)

That night,  I went home and google on those diseases. As I read through the details on how those diseases affected one's life, I felt devastated. It is impossible for a new parents to accept the fact that their lovely newborn has genetic disease, or a disabled child. We were in denial, we did not believe that this will happen to Evelyn. It must be just a suspect from those doctors.

We see nothing wrong with her, she was still actively kicking her legs, smile like a happy baby.

Her small legs and right foot deformity

Love her worm toy

"Tragedy should be utilized as a source of strength. No matter what sort of difficulties, how painful experience is, if we lose our hope, that's our real disaster." - Dalai Lama XIV

Evelyn weighed at 6 months old : 4.51kg, 59cm

2 - 4 months

2 months old

I have started to google for all her deformities, but didn’t know what those signs tell. Since there was nothing much we could do to fix her deformities, we thought we will leave them aside and concentrate on raising her. While keeping the 1) torticollis massage therapy; 2) right foot message; 3) double diapers daily, we have also kept the prayers and hope for the best to happen. We went to Tropicana Medical Centre (TMC) for her monthly pediatrician check and vacinnation because that is the nearest hospital.

Guess what? Evelyn had gain 1.22kg since birth,  at 3.32kg, 53cm. :)

 

Evelyn enjoyed her colourful toys :) She was bending her right leg because she cant open it wide apart due to her right hip dislocation.

3 months old

We were referred to another opinion who is also known as a specialist in pediatric orthopaedic - Dr Robert Panafold (Damansara Specialist - KPJ). Dr Robert asked not to worry about her right foot deformity, because Evelyn's right foot seemed to have normal shape, all her bones are in order and functioning well, and looks like a normal foot. The most worried should have been on her hip. So an ultrasound was ordered for Evelyn's right hip. Good news! It was confirmed that her hip was well located :)

We have been playing "Your baby can read" DVD and rythmes & songs since her 1st month. She loves them very much.  Look at her, she started to have a chubby face! She always smile and happy! She has started to babble when talk to :) am happy that she has grown up so much. I know there is a long way to go, and there are still alot to deal ahead for all her deformities, but we just want to focus on things we could do to raise her each day.

smile with tougue out :)

Look at her! She is kicking :)

4 months old

As she grow, we have noticed her uneven rib cage, her right back seemed to be uneven with a hump and abit mishappened, but we didn’t know what that was. Praying is the best thing we could do. We just have to keep a positive mind that everything will be alright.  Evelyn seemed to be very floppy like a newborn still, She has had a very poor muscles tone, her skin was soft.  She cant do rollover from her tummy to her back still. The worry have back again in our mind.

Those clicky sounds from her joints is getting more obvious. We have to handle her very gently to avoid joint dislocation. Her body is growing, but her legs were very small. I hope they are similar baby so I can refer to and know what is the underlying causes.

Apart from those deformities, her weight gain was extremely poor, she was far apart from the 3rd percentile growth chart. She had no head control at 4 months old.

Her legs are smaller in proportion to her head

Quote : "I believe God is managing affairs and that He doesnt need any advice from me. With God in charge, I believe everything will work out the best in the end. So what is there to worry about." - Henry Ford

 

Evelyn weighed at 4 months old : 4kg, 57cm