Jodie Means Grace of God

It's been a while

2011-01-06T10:22:00.000-08:00

Well I have to admit, it's been a while (a very long while). The last 8 months have been really busy for us, I started working and stopped working again.... long story but I am working from home now and my precious little Jodie is with me. It's difficult I have to admit to work and to look after her, but God is giving me so much strength. Jodie is doing really great, I am running after her as she is crawling really fast and laugs when I run after her. Her eating is still a problem and the dreaded constipation has returned. We are starting her tests again and hopefully we can get her spinal MRI done as we have tried on two seperate occassions but it failed. It's unbelievable to think that she is now 20 months old - WOW time has really passed quickly. She went through a series of pneumonia and whooping cough but that is a thing of the past now. She still feeds every 2 hours and has been drinking out of a sippy cup for 6 months now. She loves standing while holding onto something and jumping up and down. I have never seen a child friendlier than her, she is absolutely adorable and smiles all the time. I will try and update Jodie's blog on a more regular basis as I really miss blogging and bragging about her.

People we meet on our journey.

2010-02-18T05:09:00.000-08:00

It's been a while since I updated Jodie's blog, we've been so busy between neuro physio, speech therapy and the opthamologist that there is not much time for me to update the blog. Jodie is doing so well, she started babbling about three weeks ago and her favourite word is ouma (granny). We received a little bad news about Jodie's eye but let me first start at the beginning. In our last nine months we have met a huge amount of people, some brilliant where you can see the passion for children in their eyes, and others... well let me not go there. I think its very important for a mother to find the rigt person to assist you with your child, and yes I am extremely "picky". Jodie and I have met Estelle Brown a neuro physio, and I firmly believe that God sent us to meet each other on this wonderful path we are walking with little Jodie. The first day we met Estelle I could see her love for children, and how hard she works to assist mommies and babies that needs help. Estelle is very highly qualified and is also involved in outreach programmes where she helps families at no cost to let their children be the best they can be. She also lectures therapists in neuro therapy. Best of all is Jodie LOVES Estelle. On our first day Estelle mentioned to me that she was worried about Jodie's right eye, and I was a little bit shocked because our paed said it seems as if Jodie has Nystagmus in her left eye, and we always thought her right eye was the better of the two. Estelle then referred us to an opthamologist who confirmed Estelle's fear, Jodie has Duane Retraction syndrome in her right eye. We will go into theatre on the 19th of April to have this looked at.... Anastetics again :-(

But God has blessed us yet again with Jodie's talking, she chat's more than any other 9 month old baby. She sits for about 5 minutes and she's rolling - Jodie you are doing a great job. Needless to say my once a month blue days have dissapeared and I thank God every day for what He is doing for us. My prayers go out to other mommies that really struggle and have babies far worse of than our little one. AND there is nothing compared to achievements, I think a person only realizes how difficult it is for our little ones to achieve a milestone and when they reach it, it is as if life has started all over again with excitement, laughter love and happiness. Jodie has taught me more in nine months that I could EVER learn in a lifetime, she has taught me about courage, strength, love, fear, and has taught me to laugh again.

She has become a real busy body, that doesn't sleep during the day, and wants to play all day long. And if I dare to leave her for ten minutes she complains by babbling in strings. Boy, God has blessed us!

Operation number three

2010-01-03T02:18:00.000-08:00

After Jodie's g-tube removal the surgeon said that the wound will close on its own within 7 days. After 7 days it still didn't close so I called the surgeon again who replied that we should wait another 10 days. I did not feel comfortable with this at all so I booked Jodie with the wound specialist, she had a look at the wound and placed a comfeel plaster on it and said we should return in a weeks time to have it removed and that it will be closed after then. Two days later Jodie was in so much pain, the plaster was pitch black and she was crying.... so back to the wound specialist we went. When she removed the plaster she immediately said the wound was corrosive, I was sick to my stomach when I saw what happened. There was seven small little holes around the big one... The hole inside Jodie's tummy was still open and stomach acid was eating away at her skin, a keloid also formed. My advise to all mommies... please let the doctor close the wound in teather when he removes the g-tube. We went to the surgeon immediately and he booked us in for closure of the gastrostomy the next day. Jodie was struggling with bronchitis again and we felt really uncomfortable with anasthetics. But with God's grace everything went well and he placed a stitch inside her stomach and glued the outside closed. The anetathist was really brilliant, Dr. Gouws, we've used him everytime Jodie's had to go for an op. He even came running out of theatre to ask me for a bottle to comfort little Jodie, and afterwards he came to see me to make sure she's ok. Well, the wound still looks sore and is red and swollen but I am sure it will take a couple of days to heal.. We will visit the wound specialist again in 2 weeks time to get silicone sheeting placed on her wound to ensure the scarring isn't too bad.

INSANITY!

2009-12-10T01:01:00.000-08:00

If there was an award for insanity, I think I would probably win first prize... Yes, Jodie is ill again. Yesterday was a very difficult day for me, I get these days once a month where I just go totaly insane. Jodie has been coughing again, and with coughing comes vomiting and fever. I never take her out of the house because of fear that she'll get ill. Sitting at home with no television, no internet, just me and little Jodie, which I suppose is not a bad thing because we get to do her neuro and speech exercises ALL DAY LONG. She is now at the stage where she starts laughing at me when I start the speech exercises. It is so frustrating when one sit for hours, like a parrot, repeating words and sounds with no response in return. We did the "normal" yesterday and then I started thinking of her future (which is a definate NO-NO). With our usual starting spells at her best friend - the ceiling fan - I started to panick. The walls closed in on me, I started hyperventilating and ended up vomiting in the bathroom. How is it possible to feel so sick? I was pondering about her health, our finances, her growth, her speech and once again her broncho-neumonia. It's absolutely driving me insane not to be able to shower (which ends up in a 10 second scrub down), not to clean the house, not to do the laundry and not to spend time with my son and hubby. I feel as if I have a newborn baby and look it too. Then when my really hectic day of doing nothing but taking care of Jodie ends, and I get into bed at 10pm totally exhausted... my jimmy legs syndrome starts :-)

Feeling a little anxious...

2009-12-06T06:43:00.000-08:00

I am so gratefull.. Jodie is doing really well she gained another 250grams in the last week although she is not growing in length nor head size. I am really thankfull that she is gaining weight and I have to say she is now drinking a liter of milk per day. Since the tube has been removed she has been doing great, I am almost 100% certain her reflux is gone. There is no more coughing and wheezing and shortness of breath, removing the tube was the right thing to do... God has been so good for our family. I have to admit I am a little anxious because Jodie's speech is not really there yet. She makes noises but with no syllables such as da,ba etc, I am sure it will happen. I exercise with her 2 hours per day and have made recordings which I play over and over again, I am just a little bit frustrated because I am not able to see any improvement.

Thank you Lord....

2009-12-06T04:20:00.000-08:00

Thank you Lord for storms, thank You that I can know that when a storm comes my way I know You haven't left me, but that You are right here beside me to see me make it through. Thank You for preparing me with each storm so that I can overcome the bigger ones that lies ahead, because through these You are my teacher. You are my gentle Giant and I thank You for catching every tear and returning them with streams of joy!

(Sent to me by my sister Debbie)

Barney AKA Brian Habana....

2009-12-02T01:24:00.000-08:00

On saturday my son, Devon decided we should play "husband, wife and baby". He grabbed Barney and renamed him to Brian Habana (his favourite rugby player). All dressed up in his pink babygrow and pink hat, he fed him his bottle and I even had to re-heat an empty bottle. After a while he asked for a syringe to feed "Brian" through his gtube. It is absolutely amazing how the last six months have impacted on little Devon. Jodie of course squealed with delight as her brother walked around with her barney on his back. At last Devon can now play with his sister and start to bond.

My Mom really likes photos...

2009-11-21T08:00:00.000-08:00

Hey I can sit...

2009-11-21T07:59:00.000-08:00

D-Day arrives...

2009-11-18T07:26:00.000-08:00

I woke up on Wednesday morning feeling very peaceful. It was a very dreary day, rainy, misty and cold. I frantically started cleaning the house almost as if I was bringing a new baby home :-) The receptionist phoned the previous day saying that we have to be at hospital at 12h30 (the story changed with them every day), and Jodie was to have her last feed at 7am that morning. So she cried from 9am until the doctor arrived at 15h00..... I threw my toys out the cot at 13h00 and phoned the lady at the doctors office, and yes, I was really rude.... I just couldn't bear my little baby screaming anymore, so I definitely wasn't nice to her, while I was having my very rude conversation I started feeling terribly guilty. When I put the phone down my hubby said "Vickie, that is not what a Christian is suppose to do". So... 15minutes later I phoned her back and apologised. We were first told she was going to get anaesthetics, then we were told he is going to take the tube out while she was awake. We didn't know what to expect. At exactly 15h00 the doc arrived, he was going to give her a local injection to numb her tummy and then pull the tube out, if that didn't work he will take her to theatre. The chances of the ball in her tummy breaking off was about 99%. That day my hubby and I prayed "God, Please let the tube come out with one pull" And the Lord answered our prayers... So once again GOD CREATED A MIRACLE! She was screaming when he injected her and then he JERKED the tube out. I have to say even the surgeon was surprised... But hey God surprises all of us every day!

My Wife, My Friend and My Soulmate by Marcel du Plessis

2009-11-14T00:01:00.000-08:00

This blog might be about my litte miracle Jodie, but this would not be possible without God and the love of my life Vickie. Jodie is so blessed to have a mommy like Vickie chosen for her by God. Sure times have been tough but with her unwaivering faith ( 99.9% of the time) and commitment, Vickie is able to provide a healthy environment for Jodie to grow and develop.

I love you my "Bokka" and I am sure that God will bless your blog and the way you are touching peoples hearts. What you are doing for Jodie is absolutely amazing !!

God Bless

Hubby

My call to the surgeon

2009-11-12T10:28:00.000-08:00

I left numerous messages for the surgeon to call me, Jodie is still drinking (Hoorrray), although still coughing and the 4th set of neumonia not cleared up yet..... His assistant phoned me back today, we can remove the tube on Saturday or wednesday, we just have to pay the doc. PHEW... I am actually stressing, now I am too scared to take it out. It has been causing viral infections, and I think it's just a way of God showing us that it's time to take it out. Jodie doesn't do too well under anaesthetics as well so I guess I wont be sleeping for the next couple of nights.

A visit to the paediatrician again....

2009-11-12T04:06:00.000-08:00

We went to the paediatrician again today because Jodie is ill ..... Her coughing is keeping her and us up all night. She is still, with God's grace drinking 90mls orally (Yippee). The visit to the doc went well, she smiled at him a couple of times and hey he couldn't help but to smile back. (I have to admit I have never seen him smile) I am so happy we changed her to Dr. Halkas, he is absolutely brilliant, God definitely led us to him as I can see the compassion in his eyes when he looks at her. Well, she is ok, her neumonia is better but still there, the viral infection from the gtube has still not cleared up. And of course after 6 months she has fluid in her right ear, which at a later stage (very later stage) will need gromets. He also mentioned that a little bit of fluid might be pushing up from her stomach to her lungs and it would be a better choice to remove the tube. (The tube also made the reflux worse) I am feeling really happy today for a change as my little baby is feeling better and the g-tube will come out soon. Financially we dont have money to remove the tube, after waiting six months but we know that God will provide.

Thank you...

2009-11-12T02:50:00.001-08:00

My hubby and I would like to thank our familes for their support during the last six months...
Our son Devon (5yrs) - Thank you little one for your prayers, you are only five years old, but in the last 6 months you had to grow up really quickly. It has been a tough time for you, but now you can see that God has answered all your prayers.
My Mother Adri - she kept me on the right path faith wise, and all her prayers
My Daddy Barry- All his tears, I can remember when they drove through to JHB when Jodie went into theatre and the first time he met her, we were standing next to her bed and he couldn't say anything he just cried. I will never forget the text messages at 5am in the morning just when I needed them
My Mother in Law Engela - Thank you for crying with me....
My Father in Law Koos- Thank you for your advice and helping us financially
My sister Debbie- The best sister ever, thank you for your prayers and daily text messages
My brother in law Jaco - Boet jy's fantasties, dankie vir jou gebedjies
My brother and his wife Ernie and Sophie - Thank you for your calls and prayers
My sister in law and her hubby - Karen and Leon - thanks for your prayers
My Ouma - Thanks for the prayers, the messages and the calls. Jodie is blessed to have an Great Grandmother like you
My Best friend Linette and her family - thank you for being there for us
THE WHOLE FAMILY - thank you for your text messages, phone calls and prayers.
My Friends - Morne, Frans, Trinette, Anel, Elize - thank you for your kind words and assistance
Jodie's "little angel" - Morne - Dankie jy besef nie hoeveel jy vir ons beteken nie, mag die Here jou ryklik seen.
Our Pastor George - Thank you for your visits and your prayers
Pastor Louis Ras who sent me text messages and prayed
My Hubby's colleagus at Standard Bank - Vuyo, thanks for the visit at the hospital, it ment a lot to Marcel. Kevin, your support is amazing and we appreciate the time off when needed. Annelize, thanks for the flowers. The rest of team - thank you for the kind words and thougths.
My son's school - Drieks and Franciska thanks for the sponsorship and taking care of Devon in this difficult time
Anneke - We dont even know you but you paid for Jodie's removal of her g-tube thank you and God Bless

Jodie's little friend... Sam the Conqueror!

2009-11-12T02:34:00.001-08:00

I can't remember when exactly I made contact with Nicky in Cape Town, but boy is she an angel from God. Her precious little Sam was diagnosed with RTS and is now 6 months old. Isn't he just a beauty. How is it possible that a person can be so close to someone they have never met. It is such a blessing to have a friend like Nicky, we have shared our fears, accomplishments, dreams, emotions and last 6 months with each other without even meeting. Nicky you are a blessing, we have a great family and it is wonderful to have someone like you. You have reminded me many times how good God is.

1 November GOD CREATED A MIRACLE!

2009-11-12T02:11:00.000-08:00

On the 1st day of November our six and a half month nightmare ended. My mother came to visit and on Sunday morning we were supposed to go to church but Jodie was still ill and we couldn't go. The day before our Pastor said we must email him photos, he would like to put it up on the big screen in church, so that they can pray for her. At 11am that day Jodie drank 80mls orally. I cannot explain how it felt, with every little ml she drank I kept on praising God. My little baby was drinking, I don't think people realise how a simple little thing like a baby drinking can change your life. For six months I had been crying, praying and just trying to MAKE her drink, then God HAPPENED. My Dad once told me "Vickie, God is in control, and He will heal in His time", if he had only knew how his words carried me through the last six months, everytime I struggled I remembered his words "God is in control". Devon was so happy, he would now be able to hold her and touch her tummy!

Week 15 back to hospital again Measles?

2009-11-12T02:03:00.000-08:00

We've been home for a week after a ten day stay in the hospital. Jodie had little red spots on her head and within hours it covered her whole body. My mom in law came with me to visit the doc AGAIN.... Jip he confirmed it looks like measles. Due to Jodie's veins being so terrible he said that I would be able to "doctor" her at home BUT if she struggles with her breathing she will be admitted. An hour later I had to do CPR again at home, jumped in the car and rushed to hospital. Well, I can now safely say Jodie didn't have measles or any of the other 21 childhood illnesses the doc tested for, at the end of the day it was a viral infection due to the gtube.....

Weeks 12 Back to Hospital...Neumonia

2009-11-12T02:02:00.000-08:00

Week 12 started off with Jodie struggling to breathe. On Sunday night my hubby and I rushed her off to casualties and she was admitted, the dreaded neumonia again. So... another 10 days in hospital. During this time we did a milk scan which showed Jodie was not aspirating but just normal reflux. We also did a barium swallow which confirmed the milk scan results. Was she still aspirating? Well the doc says the nissen stitches are completely loose and her reflux is still severe but he does not think that the fluid is going to her lungs.

Week 10 She's drinking again...

2009-11-12T01:56:00.001-08:00

Week 8 and 9 Jodie has neumonia

2009-11-12T01:54:00.001-08:00

It took me 8 weeks to teach this little baby to drink, we have reached 50mls orally. She now once again has neumonia and has stopped drinking. Every time Jodie gets ill, I have to start from scratch again, with a number 1 teat and exercises.

Week 7 A visit to the family....

2009-11-12T01:53:00.000-08:00

My hubby suggested that I visit my family for about two weeks, just to get away and "relax" :-). My sister also havent seen little Jodie so I thought it was a really great idea, I so missed my family. Now you have to understand my mother is a "no-nonsense" lady when it comes to babies.... When I gave Jodie bottle I would give her a few sips and take the bottle out to enable her to breathe, she could not breathe through her nose with the teat in her mouth. Thank goodness my mom took over from me the one day, and to my suprise she just taught Jodie to breathe through her nose... So the drinking started, Jodie took 60mls and was doing great. It was so nice to wake up in the mornings with my family around me, with my dad shouting "Good morning! God is going to create a miracle today" and my sisters loving smile. I even couldn't wait for Diarco (11yrs) and Diandrie(9yrs) (my sisters kids) to jump on me in the mornings. I have to tell you about Diarco - He is such a precious little boy - he said one day he wanted to pray for her but alone... So we gave him some time with her... Diarco, Diandrie i just want to say thank you and remember to hold God in your hearts everyday.

Week six at home.... A light in the tunnel

2009-11-12T01:50:00.001-08:00

Thank you Lord... God gave me more and more strenght every day, I slept for about 2 hours in 24 hours and in the mornings when my day started, I prayed, "Lord, thank you for giving us another day with our baby, thank you for letting her breathe". Jodie was now drinking 25mls every two hours and I gave her 55 through the tube. Well, at least she is now drinking, we will remove the tube as soon as she hits 80mls! It took me six weeks to teach her how to drink, but we are not there yet.

Jodie stopped breathing....

2009-11-12T01:41:00.000-08:00

During the 5th week at home I was doing the "normal" feeding with Jodie and once again she refluxed... BUT this time it was really bad, the milk kept on coming out of her mouth and suddenly she just went "floppy" with eyes rolled back. Jodie wasn't breathing, I turned her upside down, blew in her face (that took about 20seconds), but nothing..... I started doing CPR (thank goodness I had training), I dropped down to the floor with her flat on her back, started CPR but it was not working. "God, please I cried, help me to save my baby" I knew that if I jumped in the car and drove to hospital she would not be alive by the time we got there. "Please Lord, Let her breathe..." After 2 minutes, Jodie started breathing.. I sat for two hours on the floor just crying. Little did I know that this would happen another 9 times

Week 3 and 4 at home

2009-11-12T01:36:00.000-08:00

Jodie's stitches in her stomach must've stretched a little bit, because every time we feed her she would reflux. Just to explain, her reflux was so severe that it caused neumonia in NICU, and if we didn't stop the stomach contents from coming out she would get neumonia again... So every two hours when I fed her, I made sure the tube stayed open for at least 20minutes. So feeding took an hour, I had an hour of "rest" inbetween. The other problem we faced was that when she refluxed we had to run and put the syringe back on, open the tube so that the contents will push up into the syringe and not to her lungs. With the vomiting continuing and her struggling to breathe with every feed all we had left was to pray.

Week 11 Heart attack

2009-11-12T01:24:00.000-08:00

My husband phoned from work saying that the ambulance is taking him to hospital...chest pains. My heart stopped and I prayed "God, please not again, please Lord what will I do without him, I cannot be without the husband you have chosen for me, I will not be able to raise two children without him" Upon arrival at the hospital the doctor confirmed it was the second heart attack for the year.