Infant Visual Stimulation - make your own part 2

After reading Glenn Doman books, I decided that I could make my own black and white boards for Ate. I used black board paper to cut out shapes. That's my foot and my hand. I bought those giant photo albums that can be your scrap book too. And I didn't need glue, I just peeled off the clear plastic and the board was sticky enough. The plastic helps in preserving the black cut-outs too.


Eventually I found it easier to do some layouts in the computer. I had them printed on photo paper and stuck them in those albums too. I think I should use plain white board paper though. The light reflects against the plastic cover and the glare isn't helping her vision.


Some things you just can't do and have to buy. I found this irresistibly cute battery operated light decoration in Ikea. Ducks and eggs! And the light changes color! Ate likes it, but I think I like it more. I find it very relaxing to look at.

The Bobath Approach

As soon as we accepted that Ate had Cerebral Palsy (the day that the neurologist-pediatrician diagnosed her with global developmental delay), we immediately looked for a physical therapist. She was only 5 months old.

After some phone calls and visit to the nearest therapy center, we decided that home visits were more appropriate for Ate. She would be one of the youngest in the nearest therapy center and since the neurologist postponed any vaccinations, she would be prone to getting all kinds of sicknesses. Therapy centers are just filled with kids that carry all sorts of viruses so we thought it was best for home visits - even if it was more expensive.

Luckily we found one - young female and determined to get her CP kids to walk. Even Ate's Developmental Pediatrician said that she is one of the best. We're so glad she has a time slot for Ate once a week.

We are very happy with her and for a time I was doing all the therapy at home. Often it can get tiring and sometimes I wish I could do more.

Ever since Ate's seizures (infantile spasms) miraculously disappeared, we saw that development was much faster. After several people suggested the Bobath Approach, we requested for a time slot to meet with Pablo Beelen who comes to Manila 2x a year. We contacted the right people and got 3 sessions with him. It would have been more if Ate had not gotten sick from pneumonia. We had to let her recover first before bringing her out again. She still has no vaccines.

Pablo was very kind and encouraging in our 1st session. He confidently says that Ate will walk and run one day. That was very good news. This man has had many experiences with CP kids and even if no one can predict the future of any child, his assessment bears a lot of weight. It gives us a clearer kind of HOPE.

But he was a bit wary on the cognitive side. She doesn't know how to play and play is necessary for learning. So we have to guide her to play. Wow, how we take play for granted. It's the first step we all need. Ate does not seem to have a sense of body awareness and she can't seem to get her arms to push. She pulls them toward herself. Hmmm... how to overcome this.

Pablo taught us the we have to create the environment and opportunity for Ate to develop. So I have a lot of research to do! Now we know what to address and some of the how... but we need more input, more stimulation for her. For one, I know she needs a lot of tactile input. So textured toys will be needed. But so far I can't find any that would really really help. Will have to improvise!

We also got to see Dra. Alexis Reyes who has a 1 year waitlist. The session was about 1.5 hours with Pablo around the whole time. Wowo came with us too. It was a good session. Very positive and well... we have our work cut out for us!

The Bobath Approach seems very promising and helpful. I would suggest it to parents with special children. And for those who can, to see Pablo Beelen. To know more about the Bobath Approach, check out www.bobath.org.uk

We videotaped all our session and Ate's physical therapist has to break it down for us. What Pablo taught us in those 1.5 hour sessions are priceless. Of course, Ate cried a lot but he had to show us everything he could in a limited time. After 3 sessions in 2 weeks, Pablo's assessment of Ate's cognitive development changed - he says it might be better than what he initially thought. We just have to help her every way we can!

Books for Special Mommas

BOOK REVIEWS

Aside from having a diary as an outlet for my feelings and emotions, the first thing I planned on next was doing a lot of reading and research on special children and conditions my child may have.

I cried many buckets of tears and slowly accepted I have a special child. I had to move quickly, I told myself. The more time I spend on crying, the less time I have to help my child. I read through my diary just a few days ago and it helped me understand how I got to where I am now. A little more stable I suppose. And maybe I’ll share what I felt back then another time.

I did start on researching as soon as Ate’s diagnosis and MRI results were shown. At first it was just whatever was on the internet. Some information would conflict with information from other websites. And I remember Ate’s physical therapist saying that it’s better to read books and publications. So we purchased a few books and still continue to purchase some more. I actually borrowed books and returned them to the owners after reading them. And a few books were given to us by friends who were thoughtful enough to think we needed it more than they did.

Some are for special cases and some books are applicable to parents with typically developing children. It’s just that parents with children with typical development sometimes don’t bother with knowing what MORE can they do for the development of their child. Special mommas will go through countless literature and research to learn what others have tried, if it worked and if it will apply to their child.

Here are a few of the books we’ve read and I hope to add more as I read more:


Seizures and Epilepsy in Childhood: A Guide
By Freeman, Viling and Pillas
A Johns Hopkins Press Health Book

The title says it all! It really is a guide. After reading this, we realized that Ate had seizures even before that day we rushed her to the emergency room. Who would have guessed that lip smacking was already a seizure? All the while we thought she was imitating us kissing her. This book also kept us calm during her seizure attacks. Because of what we’ve read, we did not panic and knew how to deal with it. We also did not have to rush her to the hospital – although there was one time I almost did because she was blue for a few seconds. The neurologist said 20 minutes without oxygen would be danger zone but of course even before reaching 20 seconds of no oxygen I was already rushing to the car. Well, she was able to breath even before 20 seconds and the seizure attack began to wane so that was just one frightful episode.

The book also helped us to decide on the medications Ate was taking. We read the small fine print on the medicines and asked around too. And this book, since it was updated, gave us the hard facts. The liver could suffer long term from medications. And another type of medication would be given should the liver not be able to cope – said our doctor.

Well, keeping her drugged was the last thing we wanted. We did see children who have been on the same drug for several years as maintenance. The parents were happy that their child had no seizures. But looking at the child, I said to myself. Yes, no seizure and also no brain activity – since I had read the book already.

We decided to go with homeopathic remedies. That would be another blog entry. And to date, she has no seizures and no medications. And brain activity is all there!

The Ketogenic Diet
A treatment for children and others with epilepsy
By Freeman, Kossoff, Freeman and Kelly

I do have this book and did read through it quickly. I thought we would need it, but as you can see, we did not need to go on the Ketogenic diet. Thank goodness! Because it is quite hard and expensive to maintain!




What to Do About Your Brain Injured Child
By Glenn Doman

I have no idea why my brother had this book. But I’m sure glad he had it! Even if it’s an old edition, it still helped. He got it on book sale after he purchased the other Doman books – which I have also read and find very helpful.

This is a good starter book for any parent who just found out that they have a special child. It gives you hope and jump starts you on your research and knowledge.

I was about to enroll in the program but we didn’t have enough funds for it. And we were able to do a lot of other research and decided to do other things that are within our financial capacity. You really have to decide where to put your money and what is a good investment for your child.

I would say that this book is a basic must for special parents.

How Smart is Your Baby
By Glenn Doman and Janet Doman

I had a friend purchase this book for me in Singapore although you can get in online too. And when another friend saw the book, he made fun of the title and mocked it a bit which annoyed me at that time.

This book really helped by giving us other activities we can do with our child other than therapy. I would call it “constructive play” activities. Of course there are many other books out there that give you ideas on what you can do with you child. But Glenn Doman activities were made for special children. This book, however, can be applied to other children. And if done so, other typical children would not be in the average but would excel in so many things. I plan to apply what we’ve learned here for our other children.













Other Doman books you may consider are The How to Teach your Baby books – Read, Math, Physically Superb, Encyclopedic Knowledge, Swim. My brother has everything in the old edition which is still good. What we don’t have is How To Teach Your Baby to Swim. Maybe after Ate gets better from her cough and cold we will get her in the pool.

Don’t get all books at once though. It may be overwhelming! Or you can get them all for cheaper shipping fees but you don’t have to do all of them right away. Pace yourself!

The New Book of Baby and Child Massage
By Robert Toporek

This is an easy reading book. Comes with illustrations too! My dad said that my grandmother massaged all her children when they were babies. And in the provinces, the old people have been doing this. There are so many benefits to massaging your baby. And more often the parent benefit more. It’s very calming and relaxing. And really, touching your baby often does wonders.

It’s just great that there is a book with a step by step guide. And part by part too! Even facial massage. The book also explains why you massage a certain way. Ate’s therapist also says that they have studied what “strokes” are the best ones.

But even if you don’t have this book yet, just hold your child and your hands will guide you on how to gently massage her.

Children with Starving Brains
A Medical Treatment Guide for Autism Spectrum Disorder
By Jaquelyn McCandless

Since we are seeing a biomedical practitioner, we thought this would be a good book. We got hold of it even before our doctor recommended it. Haven’t gone through most of it yet, but so far it has been very informative.

Ate does not have autism, but biomedical treatment would greatly benefit her. I wondered why so many supplements are needed these days. The explanation is simple. The food we take isn’t the same as the food we used to take. And the food our parents ate during their pregnancy when they were carrying us isn’t the same as what our grandparents ate. The food has more chemicals, more steroids, more processing, less nutrients, less vitamins, less minerals. More of what we don’t need and less of what we need. The environment isn’t the same. And we’ve paid for it through the years. And in my case, my child is suffering from it.

Each child has a different chemical composition, so to speak, so we need a doctor to guide us. Ate had this test done and we found out that she had a lot of toxins in her body. And that her biological make-up could not cope with it. So there! We have to find supplements that will help her and foods to avoid for her.

Your Child without Glasses? Help your child to perfect eyesight without glasses
By Janet Goodrich

Can’t find a photo of the book online and don’t want the hassle of taking a photo of the book I have. I just borrowed this book by the way. But I would like to get my own copy as well as the other more recent books of Goodrich.

I wish I had read this book before. Or at least I wish my parents did. I have poor eyesight. And the only reason why I don’t wear glasses or contact lenses now is because I had laser surgery done a few years ago. If only I knew these before! Well, at least I can start applying them now and hopefully not need reading glasses at 40 – as what the eye doctor said would probably happen even after surgery.

This book comes with fun activities and even songs with notes for the keyboard! Yes, you sing to your child to help her vision. I’m sure it will also help Ate’s hearing problems! Hmmm… time to find a book on how to improve her hearing.

Embracing God’s Purpose for My Special Child
By Malou Tiongson-Ortiz

I read this book without tears, to my surprise. My dad has been trying to read it, but after a few paragraphs he has to put it down because his face is covered in tears. A fellow special mom recommended it to me and I immediately went to the local bookstore to purchase a copy. It is written by a Filipino mom just like me. Her daughter has Down’s Syndrome.

It really puts everything in perspective and really helps special parents cope. She had put into writing all that was in my thoughts and in my heart. At least most of it! Everything she said I knew, perhaps because of my Catholic upbringing. She quotes a lot from the Holy Bible and it has been the same Christian teaching ever since the beginning of Christianity. She had applied it all to having a special child and reading her book not only inspired me, but organized my thoughts and strengthened my resolve. I know now that God was, is and will always be beside me because of the blessing He gave us.

This is another basic must for any special parent. And I dare say, even for none Christians. It may help you find your faith. All the more I am convinced that the only way we can really love our special child, is to love God and place complete trust in Him.

I read this once, but it is good practice to read it over and over again to find strength.

Lord, I place Ate at the foot of your cross. Ate is your warrior here on earth fighting to save as many lives by touching and inspiring them to be holy and pure as she is. As her mother, I place my life in Your hands. Mama Mary, guide me in being the best mother to Ate. Do as you will, Lord. I pray that my life will be a worthy offering to You, because I know I do not deserve a blessing such as Ate.

Infant Visual Stimulation - make your own part 1

Black and White

Red and White

High contrast colors and toys are great visual stimulation for babies. The vision is the last to develop in infants because inside the womb it was pitch black except for those times when we put the flashlight close to my tummy. We did that flashlight to get Ate to turn around when she was still in breech position.


We found this toy rattle and bought it for Ate for her 1st month birthday. We named this soft rattle Pupu. Not very creative but that's what Ate seemed to be doing all the time -- poopoo!

Inspired to find more infant visual stimulation toys I went around looking for a mobile with these colors. I couldn't find any locally so I ended up making my own blocks. The photos are the personalized touch. And of course, letters forming her name. These blocks were placed randomly beside her crib because before 1 month, she was looking mostly to her side. Eventually she was able to look up at the mobile.


Using the mobile given to us during a baby shower, I placed the blocks I made using red ribbons. I simply tied it to where the other mobile toys were. The mobile turns too! Manual though. And it lasts for 3 minutes so I have to wind it up again.

It was good visual stimulation for Ate, I think. Eventually she started looking up. Sometimes I would put a flashlight beside her and let the light point to the black and white images. She really looked up then.

The downside is these are just printed on photo paper and I assembled them so they're not very durable. But they're very light weight so if they did fall on Ate it wouldn't hurt. Plus, I couldn't put heavy weight blocks anyway.


This is Ate's daddy's crib when he was a baby. It's that old. Ate's grandma also used the same crib when she was a baby. It's really that old!!! Call it a family heirloom. We used it for a while but eventually we got a Graco Pack & Play when she was able to move around more.


Ate had the same color theme for her baptism. These chocolate cupcakes had white frosting with red sprinkles and mini-oreos. My sister in law helped me prepare these.

And even her cake was black white and red. We got a plain white cake and did the decorations ourselves. We used Hershey's chocolates chopped up, mini Oreos and red Gummy Bears!

Steak and Paksiw

Happy 2^nd Wedding Anniversary to us! Happy to be married to my hubby for 2 years now with 2 kids – our little miracle Ate and our second one on the way!

Last September 8 our plans had to change again. The plan was a simple lunch in Bon Giorno in Tagaytay while Ate stayed in her Oma and Wowo’s house. But she had been having this runny nose for a week and on our date, she had a slight fever. We still brought her to Oma and Wowo’s house where it was cooler. And we still had our lunch date, but not in Tagaytay.

We tried a new restaurant called Wooden Horse Steakhouse which was nearby. Molito Building near Alabang Town Center. It’s been on dry run for 2 weeks and grand opening hasn’t been scheduled yet. Some of the items on the menu weren’t available but the waiters were eager to please us. And they looked sharp in their tailored black cowboy shirts, denims and cowboy hats. Only a few dined there for lunch since it was also a weekday.

Food was great! We started with yummy melt-in-your-mouth onion rings which surprised me because I normally don’t like onion rings.

We had sirloin steak and tenderloin steak. Yeah, we’re meat eaters! I wanted my steak a little bloody but to be safe during this pregnancy I had it medium well while hubs had his medium so I could still taste it. The chef and one of the owners is Japanese and we could see him through the glass wall kitchen. I just love it when the chef is the owner of his restaurant. They really make sure everything is served well. Our steak came with options of A.I. sauce, gravy and this Japanese sauce. Of course we had the Japanese sauce which had a little red wine in it. That was good.

There was no more room for dessert though. And we had to head back to Ate to keep watch.

Ate slept most of the day and appeared very weak. Her fever was slowly going down with the help of Paracetamol every 4 hours and constant wiping with vinegar water. Yes, vinegar has it’s medicinal use! Don’t bath your baby if she has a slight fever.

We warmed water and mixed it with vinegar. We dipped her face towel in the mixture, squeezed out the extra liquid and constantly wiped Ate’s forehead, neck, armpits, arms and legs. We did not wipe her back, chest or stomach area since this can add to the colds she already has. Right after wiping with the moist towel, we wipe again with a dry towel so it doesn’t dry up on her skin.

We saw the temperature drop slowly throughout the day. We had a log book and took temperature often. And mostly before and after her vinegar wipe. It would really drop.

Salinase was used for nebulising her and we let her sleep as long as she wanted. We’re glad that she still had her appetite for meals and milk. Lots of hugging helped too. And I spent most of the time just lying beside her. We really think close physical contact is part of the healing.

A great help which we also believe in is homeopathic remedies. Our homeopathic doctor gave us a remedy after I told him all the symptoms. We believe his previous remedies was also what controlled or even stopped Ate’s infantile spasms. More on that another time.

By evening, Ate’s fever had gone down. And hasn’t returned since. We didn’t have to wipe her with vinegar water anymore but she did smell like paksiw. Our little kutsinilla or baby lechon heehee! Yes, it was yummy hugging her!

A short visit to a new paediatrician in the nearby hospital assured us that we were doing the right thing. There was no phlegm in her lungs and it sounded clear. She just had a stuffy nose and sleeping on her belly allowed her to breath better at night. We were to continue with the homeopathic remedy, nebulize and be on the look out for fever. Her rashes on her forehead didn’t alarm the doctor and we observed that it appeared red only when she perspired. Little bumps were still there so we just put topical ointment – Jar of Hope by Indigo Baby which is proven safe, has natural ingredients and most importantly did not conflict with homeopathic remedies.

Right now she’s sleeping on her back again which means she can breath better. She was a bit on the lazy side today, I would say. But that’s okay since she’s recovering. She’ll have her exercise again on Tuesday when she meets Pablo Beelen for the third time. I’ll let her do her other more relaxing activities for the next few days.

Mmmmm! She smells so good now. Will let her sleep beside me tonight.

Unexpected changes in our lives

Earlier posts are my journal entries that I decided to share. This post dated September 8, 2010 is when I started this blog. I realized that I should also share what I had gone through before September 2010. I read through them again and saw myself in the mirror.
....

Here I am again attempting to start a blog! I’ve had a few blogs before but ended up being nonsensical, trivial and sometimes mundane. Most of time, it felt much like a diary of an uninteresting life. Nothing had kept me really wanting to write and I’m not sure if I really had much to share. Only close friends read it I suppose. And when I read it, it was just cherished memories of a simple private life that I decided it wasn’t really worth broadcasting over the internet. Not sure if anyone was interested or found it helpful anyway…

But life has changed. Soon after getting married, we found ourselves pregnant. We were totally clueless parents. Come to think of it, we still are because of all the unexpected surprises!

Finding out that we were pregnant, to begin with, was a wonderful and unexpected surprise! After 9 months and 1 week of wedded life, we gave birth to our first child, Ate. Yeah, she is a honeymoon baby (or technically before honeymoon since we went for our honeymoon a month after the wedding). God has a funny way of telling you that you’re ready for His next surprise.
I waited impatiently long to be married and I’m glad I did not marry earlier because I believe I would have lacked a certain maturity. We decided to let go and let God decide when we would have a child. And I thought that I would have to wait again before having a child. But He has his plans! And boy did He give it to us!

We were the typical first time parents for the first 5 months of Ate’s life. I remember our first diaper change in the hospital without the nurse or my paediatrician friend. It was early in the morning and we were both sleepy. Ate cried incessantly until we both got up. Her poop was still the gooey black type which is typical of babies just hours or days old. We fumbled, she was not comfortable, we forgot to warm the water, it took us several minutes when it should it be quick, but we still did it. It was our first team effort into something so important to us. It was nothing compared to our team effort in fixing up and maintaining our home. It was thrilling, scary, wonderful, fulfilling… just emotion packed! Each moment we enjoyed with her from changing diapers, bathing her, feeding her, having her vomit on you. She smiled and cooed in a few months. She knew her mama and her papa. She looked at our faces and smiled at us and we smiled too. We were the typical family then. We were all growing together. She bonded us and she continues to strengthen our marriage.
But on her fifth month, it was a rude awakening with a rush to the pediatric emergency room. It was her first recorded epileptic seizure called infantile spasms. We were all dressed up and on our way to my brother’s wedding. In her car seat, she involuntarily rolled her eyes up, jolted her arms, extended her back, gasped for air and slowly her lips and skin around her lips turned blue as she did this jerking motion 8 to 10 consecutive times in the car. A few days earlier we had already brought her to a child neurologist after much prompting from our paediatrician friend. She had head-lag and could not lift her head when prompted up to sit. We were to just observe then.

By the time we were at the E.R. that day, all her vital signs seemed normal. The child neurologist said it could have just been aspiration because she was drinking milk from a bottle right before it happened. But I knew it was a seizure even if I had never seen one before. We had an EEG done the next day and there we saw the seizure spikes. A few days later, she had another seizure attack. It quickly became a daily attack and was happening more often in a day. The 8 jerking movements quickly went up to 100 jerking movements lasting several minutes and these episodes increased to as much as 5 times a day. On a few occasions, she turned blue and desperately gasped for air. We could not do anything but hold her close since she had to “ride” through it.
We were all helpless, clueless and it was a time of despair, anger toward God, confusion and sorrow.
We had an MRI done and the results devastated our family.
Ate was diagnosed with lissencephaly or smooth brain….
Since then, our family life has never been the same. We have gone through several buckets of tears and will most likely go through more. As my sister in law so wisely put, the tears will never stop, but neither will the moments of joy.
We are totally clueless as to what will happen next and how to handle it. Thank goodness for family, friends and friends we have not met yet who have shown us unexpected support. This blog is our family’s journey in life blessed with a special child. We are an ordinary family going through ordinary trials that any family goes through. We write here to remind us of the many things we should be thankful for. We share what we go through because either we find them worth sharing online or we simply just want to write our thoughts. Many of what we post here are personal and perhaps may have little to do with having a special child. We are a simple family, trying to live our ordinary lives extraordinarily well. Clueless as to what God’s next surprise will be. Not expecting, but hoping. And we do this all for the glory of God who continues to bless us with miracles each day.

Maybe I won’t be such a “clueless” momma one day. If I say it fast enough with a smile on my lips, it could sound like “coolest” momma – which is what I need to be, cool and collected.