A few days ago as I was packing for this trip to the US, I was already planning this blog post. I was confidently thinking of a post titled “Tips for Travelling with an 18-month-old”. I thought then that I had what we needed to occupy Anna on the long flight even though there was always uncertainty with regards to how she would behave on the plane. And after all, we have travelled a few times with the boys when they were that age.
Post-flight, the conclusion is I couldn’t write that post because apparently, my tips didn’t work for my trip and my 18-month-old!
I had bought her a new colouring book with colour pencils and a new sticker book to occupy her on the plane. I also made sure to have lots of her favourite snacks and enough formula for as many bottles as she wanted. But they didn’t keep her occupied for very long. She’s a very active baby and full of zeal for life. She didn’t want to stay in one place for long of course. And she wasn’t interested in watching TV, which was a lifesaver for us when we were travelling with Evan when he was younger.
She did sleep for about half the total flight time though, but kept waking up every now and then to scream. Probably because she wasn’t in a comfortable position or realised that she was in an unfamiliar place. She also screamed quite a bit when she was tired and needed to sleep. I feel bad for the other passengers.
I was looking at the flight info and watching the hours tick by, ever so thankful to see the hours go down from 11 to 10, 8, 5, 3 and finally to 1! I was glad to wake her up then and enjoy the last hour of the flight with a happy, post-nap baby.
I remember it was always hard travelling with toddlers. but it’s probably the hardest this time. Or maybe it’s always easier to look back at a trip and remember it fondly after some time has passed. The kids all have different temperaments too and some are more content than others to sit and do something.
It’s definitely worth it to take the long flight in order to see family and spend time with them and the kids are so happy to be at Grandpa and Grandma’s.
We still have the flight home and I hope it goes better now that she has had ‘experience’ travelling transcontinental. If anyone has any tips that may work, please share!
What a gush of emotions the month of December brings as we remember December of last year. Anna was born, found to have a cleft palate, hospitalized at 6 days old, diagnosed with Pierre Robin Sequence, tube fed for 2 days in the hospital and finally discharged on Christmas Eve. It was a quiet and solemn Christmas last year.
This year, as the month of December came around, the feelings are so different. It is joy, hope, gratitude and love that fill our hearts this year. Anna has recovered well from her cleft palate repair surgery, is eating well (and loving her food, or our food more than hers) and growing well. She likes to reach for our hands so that we can assist her in walking around the house because she finds crawling too slow and probably overrated.
We celebrated Anna’s first birthday with a Rainbow themed party. I chose the theme as the Rainbow speaks of God’s promises and covenant to us. He is the One who promised us Anna and gave us Anna, and we know He will be the One Who will see her through her life. He doesn’t break covenants. As we have covenanted to give our lives and our children to Him, we know that we are in good hands.
John 10:10 tells us that the thief (which is the devil) comes to steal, kill and destroy. But Christ came that we may have abundant life!
We named Anna after Anna in the gospels who is a prophetess. The nature of a prophet is to declare God’s Word and messages to His people. With a cleft palate, one will not be able to speak if the cleft palate is not repaired. This all makes perfect sense if we understand what God’s Word is saying – the enemy is trying to steal and destroy the purposes of God in our lives. I was also born with a cleft palate, and yet my testimony is that now I am a teacher by profession and also teach God’s Word to His people. The enemy has not managed to stop what God wanted me to do for Him.
So when the paediatrician told us when Anna was born that she had a cleft palate, strangely a sense of peace washed over me as I realize this is a challenge Anna has to go through and overcome, and after that she will be speaking for the Lord!
When we say Anna is very special to us, it is not that we are biased because all our kids are special to us. We just have an extra soft spot for her seeing what she’d had to go through in this first year of her life – countless doctor appointments and tests.
At one year old, Anna is healthy, all the tests have shown that she doesn’t have any other problems. We are indescribably thankful to God for the grace He has given us for this journey and also for the days ahead. I believe this year’s Christmas will be a much happier affair than last Christmas!
I really wanted to take her first year photos and am thankful for a very talented friend who took these great shots for us. Here are some of Anna’s special moments with her brothers and us. And just to show the funny and very human side of her, I’ve also included some NG shots!
Amidst the smiles, there were also tears…
And check out this “I am not impressed” look when you zoom in to this happy family pic!
Us humans tend to form groups and cliques with others of common interests or backgrounds. For this group of parents, it was our special loved ones that brought us together. We are all mommies and daddies who have babies born with either a cleft palate or cleft lip and palate (except for our dear medical personnel friends who are in the group too).
Through the journey with Anna – taking care of her before and after her surgery for cleft palate repair, we have gotten to know these new friends. Some have had kids already gone through the surgery before us, others have kids who have yet to go through the surgery. Having been through this ourselves, we know how important it is to have support and also to have people we can ask questions of. Google has been a good friend but Google also has many other friends and they don’t all say the same thing! “Don’t give baby solids yet”, “start baby on solids at the same time as you would any other baby”. This is just one example. And we also haven’t been able to find a website or a group in Singapore. This is important because what we go through is more similar, especially if we go to the same hospital.
So from this group of parents, we formed a small group on Facebook where we can share experiences and ask questions. We also hope to be able to help other parents going through the same journey. So if you have a cleft baby too and are looking for friends and support, please join us. But because this is a secret (or closed) group, I’ll have to add you in. Please search Singapore Cleft Parents Support Group on Facebook to find us.
We have also come up with a website/blog with more information about Cleft Lip and Palate in Singapore. We hope it will be a useful one-stop place for anyone who needs help. Visit us at www.ourcleftangels.wordpress.com and please like our page on Facebook. Search for Our Cleft Angels. Thank you!
How times flies. We’ve been discussing and planning Anna’s first birthday these last few days. Yes, it’s a month away from her first birthday!
As I write her 11 month update, I think back on those early days of her life when we were sitting in the hospital with her, when she was admitted for breathing difficulties due to Pierre Robin Sequence that she was diagnosed with. We were feeling quite helpless and down as we watched our baby girl be fed through a tube in her nose and as we had to say goodbye to her each night because we could not stay over with her in the High Dependency Ward. She was only a week old. But one thing we kept telling ourselves was to think, next year, next Christmas (it was close to Christmas then. She was discharged on Christmas Eve.), she would be eating with a normal palate and crawling and playing and maybe even walking. It was Hope that we clung to, and Hope that kept us going. And today, we are almost there, almost at Christmas. Before that, we get to celebrate her birthday and her first year of life. Today, she is eating and drinking like a normal baby, although not as advanced in terms of the types of food. But nonetheless eating and drinking, with no food coming out of her nose, no tube-feeding and no need for any special bottle for cleft babies!
So as we cross over her 11th month onto her first birthday, we have much to be thankful for.
We are thankful for the One in whom we hope, without whom we have no hope. “Because He lives, I can face tomorrow. Because He lives, all fear is gone. Because I know He holds the future. And life is worth the living just because He lives.”
We are thankful for support from friends and family. Those who came to see Anna, those who prayed for her, those who left supportive notes.
We are thankful for good doctors and nurses and for the excellent healthcare here in Singapore. Also thankful for a special nurse who has become a friend who went the extra mile in her job to get pedi-wraps made for babies who just had surgery. These wraps can’t be bought in Singapore. They were so helpful to keep her hands out from her mouth and to keep her mouth safe!
This month, we celebrate Anna’s recovery from surgery, her eating well and her learning to stand! This girl loves her food and wants to join us when we eat. May her passion for food also be a passion for life! She is a fighter and has fought well after surgery. She took the pain and the discomfort well and even though giving medicine and milk was really difficult in the first 2 weeks, the worst is over and she’s her happy self again soon after.
And today, on her 11th month birthday, she stood for quite a while on her own, without support! Thank you Vanessa for capturing a picture!
Thank you all for your love for Anna and us. Celebrate with us as we celebrate our little princess!
This will probably be a short update. It’s because time seems to have zoomed by in the 9th month of Anna’s life! It could also be because it has been quite an uneventful month in terms of not having any hospital appointments and scares. For this, I am thankful.
Anna now has 6 teeth! Her teeth came out in the exact pattern her brother Evan’s did. It was the lower 2 central incisors followed by the top 2 lateral incisors instead of the top 2 central incisors. So you can imagine how strange yet cute it looked. “Almost like fangs” is the joke we make. But Evan doesn’t like us to say that. 🙂
She is also sitting up very well by herself now. She doesn’t crawl yet but just pushes herself backwards when placed on her tummy and she also spins around in circles.
She loves grown up food. Or ‘human food’ and ‘real people food’ as her daddy says. It’s too bad she can’t really take solids yet. She’s been on cereal once a day and we give her bites of bread, banana, pancake or whatever we may be eating that may be soft enough for her. The fear is if the food goes up her nose due to her cleft palate. It would be a nasty feeling as you can imagine from experiences of having food go up our nose. So far it hasn’t happened except her cereal, which goes up quite often and I feel bad for the little darling.
We’ve heard and read so many different things about feeding cleft palate babies. Even our doctors and nurses say different things. It comes down to trial and error and using common sense tempered with parental wisdom. I’d like to write a post about feeding cleft palate babies one day soon to share our experience and what worked for us and Anna. Some things we wished we’d known earlier. But we survive and move on.
One thing that’s going to happen soon is Anna’s surgery to fix the cleft palate. The date has been set for 14 October. I try not to think about it as I don’t think I can bear my little baby having to go through the pain and trauma of surgery. And post surgery, she’ll have to have her arms in splints for a few weeks so that she won’t pick at the wound. And she also won’t be able to eat anything except milk and that has to be given from a cup, spoon or syringe. We’re teaching her to use a cup with a short, soft spout now so that hopefully she can drink from that after the surgery. Deep down inside, I’m just praying for a miracle healing so my baby doesn’t have to go through the surgery. Please pray along with me.
I know His grace is sufficient for us. On the day that Anna was born, God spoke to me and said, “Anna means grace.” It was a quiet, solemn promise in the early hours of the morning that He has given us Anna, and He has given us grace.
So on September 16, Anna turned 9 months as we celebrate Daddy’s 3_th birthday! And here are some photos from the past month.
I know, I’m a week late. I appreciate those who asked about Anna and still remembered to wish her happy 8 months on her 8th-month birthday, even though she’s only a wee little baby. She’s well-loved by many. Thank you everyone who loves Anna and prays for her. We appreciate the prayers especially when things got a little rough last week.
An 8-month-old baby is picking up a lot of new skills. It’s so fun to watch. But it was this trait that gave us a scare last week. Anna started rolling her eyes up and tensing her body and shaking at times. I know what comes to your mind as I’m describing this, because that’s what came to our minds too – seizures. We were concerned enough that we mentioned it to her Plastic Surgeon and Speech Therapist whom we saw last Tuesday. They recommended for us to bring her to her geneticist who basically takes care of her from top to bottom and monitors her progress and makes necessary referrals. We are so blessed to have Dr Angeline Lai from KK Women and Children’s Hospital looking after our Anna Joy. (She happens to be a good friend of the PD who first saw Anna when she was born and I think that helped her decide to take on Anna’s case herself after she saw her in the ward. She happens to be the head of the Genetics Dept in KKH. We are very blessed.)
Dr Lai saw her on Friday and from what she saw, what we described and the video that we showed her, she didn’t think it sounded like seizures. So we are to keep monitoring her. And after prayers and some days, she did stop the shaking. In fact I remember we specifically prayed that the shaking and eye-rolling would stop even if it was just something fun she’s picking up, just so that it won’t scare us, and they did stop.
When we saw Dr Lai, she sent Anna for her blood to be taken and sent for chromosome testing. This is to rule out the possibility of her having some chromosome 22 deletion. In layman’s explanation, it means a part of chromosome 22 on her DNA is missing and that could cause other problems, one of which is seizures. So the chromosome testing gets her DNA mapped out and scientists/doctors check to see if the chromosomes are normal. (much fun to research for science people but not fun to think about your child having abnormalities in her chromosomes) The test results were supposed to come out 2 weeks later but we just heard from Dr Lai yesterday that her chromosomes are normal!
Dr Lai wrote:
“Hi Mrs Walcott,
I just saw Anna’s chromosome and FISH result, and wanted to quickly let you know the good news that it is normal!
This would exclude diGeorge sequence, also known as 22q11 deletion syndrome.
Hope you all have a happy weekend”
A happy weekend indeed! Because that was happy news!
A little background on Anna: She was born with a cleft palate and diagnosed with Pierre Robin Sequence. (you can read more about her early days here.) There are a few causes for PRS and one of them is the chromosome 22 deletion. PRS could also be associated with other syndromes such as Stickler’s Syndrome. We have sent her for multiple tests and to see different doctors and specialists. All the results and diagnoses have come back with good news. And as Dr Lai put it, it could just be an isolated case of a cleft palate. It is genetic because I was also born with a cleft palate but I don’t think I had/have PRS. An uncle of mine also has a cleft palate. But his was never repaired.
On a side note as I mention this, Anna’s plastic surgeon looked at my palate just because he was curious. He said in the 80’s in Singapore there were only 2 surgeons who did palate repair and success rates were not very high so he said I am very fortunate! Indeed I am and I’m even an English teacher now! Compared to the possibility of not being able to talk comprehensively, I think I have come out on the much better end! More proof that God has a plan for me, for Anna, and for each and every one of us. Even if we are born with issues, even if we go through difficulties in life, God can turn things around for good, if we choose to trust Him and walk in His will.
Quick update on Anna’s growth and development:
Weight: 8kg (she’s in the 50th percentile now! much improved from 3rd percentile at 2 months)
New tricks: crawling backwards, saying ‘ga-ga’ and she did ‘la-la’ and ‘ba-ba’ once, she reaches up for us to pick her up and sometimes grabs our hands or shirt so that we will pick her up, she’s learning to recognise faces and gives a serious look when she meets strangers, she can sit up really well not and flips over on front and back easily, she also loves to jump and bounce and flap her arms when she’s happy and she’s often happy!
So as we rejoice and celebrate Anna’s 8th month, here are some pictures from River Safari where we visited last week!