All The Wrongs Have Been Made Right

I've waited for more than 3 months to post this update as I want to give Theodore's body the adjustment it needs. So far, Theodore has produced normal stools twice already. He still poops numerous times per day but with a decrease  in volume and an improvement in appearance. Stools are no longer as water as before. 

Overall, he maintains a happy disposition. He walked exactly a month after his third and last surgery. He talks - A LOT. He can pronounce simple sentences in the Bisaya dialect. He is his own little person, and he is very expressive of his likes and dislikes. 

The only reminders of everything he has gone through are the two long scars in his tummy. Whenever he meets someone for the first time, he would raise his shirt to show off his battle scars. He has finally gained weight too. Yehey! Two days ago, he weighed in at 10.3kls, which is not bad for an 20-month old baby. 

Looking back, I can confidently say that 90% of the wrongs have been made right. 

It pains me to accept this but we have made a lot of mistakes when he was younger. I allowed myself to be stressed the whole time I was pregnant with him. Although I went to every single check-up, it wasn't enough to compensate for the emotional trauma and physical excursions of working and living in Manila. I knew I should have taken better care of my body when he was still inside. 

We made a mistake in choosing his pediatrician, who I have thanked numerous times in previous posts. She has failed to recognize all of Theodore's symptoms, and have repeatedly brushed off our concerns of his failure to gain weight and frequent illnesses. I remember my husband, Marc, recorded the times Theodore would suddenly develop fever (complete with dates, time and temperature) to show the pedia. But she just said it could be because of the environment. We used to live in a 2nd floor apartment, and in a relatively nice area in Makati. We moved to change the environment, but Theodore was still the same. 

We made a mistake when we allowed the pedia to choose Theodore's other doctors. One doctor said she couldn't find the thymus, and I cried my heart out. It was very scary for me, as a mom, to be told that your child's immuno-compromised because I know that meant a bleak future for him. 

We made a mistake when we waited too long to come home. I was afraid of letting go of my job then because it was a once-in-a-lifetime opportunity for me. I was just getting accepted as a true part of OPAPP-OSEC (although I have been there for more than a year). I have made friends and contacts, and I was finally having fun. If  I had decided to come home earlier, Theodore wouldn't have to suffer too long. 

When we found out that I was pregnant with Theodore, I must admit that I felt disappointed. I've just started a new job and it was not the right time to be pregnant. But I loved him the first time I saw him as a bleep in the monitor of the ultrasound machine. We planned his introduction to his big brother, and we even involved Kuya in all the preparations for Theodore's arrival. 

But you know, all the mistakes we made guided us along this difficult journey. They have made this triumph sweeter. We learn from our mistakes, and we are forever grateful for the people who have supported us, prayed with us, laughed and cried with us, and even stayed up late to wait for Theodore to get out of the operating room. 

It has been a long and stressful journey towards recovery, but Theodore is such a fighter. Today, you cannot even see any sign of his past when you look at him and see him smile. You cannot believe what he went through to continue to live when he talks and plays. 

Thank you for being an instrument of God's grace on Earth!

Theodore 2 weeks after his last surgery. He has forgotten all the pain, and looked completely happy. :)

Theodore's New Extended Family

We are blessed. Despite everything, we are blessed. 

On 27 March, friends in Dubai came together to do a photo shoot for a cause. Their beneficiary? Our little Theodore. We'd like to call them friends...even family...even though we have never met them because they took the time to show their love and share their blessings with our little fighter. These are the people who help us restore our faith in humanity. These are the individuals who are willing to help out regardless of nationality, distance and personal differences. Because of them, we are truly blessed. 

Theodore continues to gain weight. In fact, he has successfully maintained his weight - more than 9kls. - and this is such a wonderful achievement. He stands unsupported, he dances, he smiles and laughs a lot, and he talks a lot too! He continues to have a happy disposition. He has the natural ability to lift your spirits with just a smile. He truly is an angel. 

On April 15, Theodore will go under the knife for the last time. We are confident that like the past two surgeries, this third one will be a success. We are confident that his doctors will take good care of him. After all, they are the best in Mindanao. We have faith in God and we believe He will continue to send his Angels to watch over our little Theodore once he's inside the operating room. 

Theodore is a blessing, not only to us, his family, but to all of us. Through him, we came together as a family. We came together with one cause and that is to save him.

Thank you very much. 

The Gift of Thank You

The past months have been crazy for the family. We found out that Theodore needs surgical help and the required amount is huge. We definitely couldn't pay for all three stages of the operation. But when I asked for help and posted my plea online, help flooded. Prayers overflowed and my family is overwhelmed.

Thank you to...

...my family for the emotional and financial support. Mama was there the whole time. She had to miss work for weeks to be with me and Theodore. Papa had to get a loan to cover some of the expenses for Theodore's first operation. He had to pay back the loan for six years as salary deduction. My sister, Ikit, and her hubby, Daddy Edward, stayed at home to take care of Kuya Nathan and to process documents in my behalf.

...my husband, although he was not there to physically care for Theodore, I know he prays every night for baby's recovery and he works hard every day to earn money for the next surgery. Ate Janette and Fay Ann, thank you for helping us out financially; and to Mamang, who has been crying since Theodore's first surgery, thank you for asking the Carmelite Sisters to pray for him. To Even and Kuya Shernan, I know you are worried; don't be, your nephew is such a strong fighter.

...my relatives, thank you for proving that blood is thicker than water. Thank you for reaching out to extend help Ate Dangkai, Kuya Batit, Mama Becky, Tita Ching, Uncle Bonnie, Uncle Danny O., Auntie Leny, Auntie Gloria, Tita Lulu and Uncle Danny I. Thank you also for finding ways to get Theodore's much-needed blood, Mama Nenet and Papa Tony. Thank you, Te Sharon and Uncle Allan, for the loan and for helping me get funding from Cong. Dayanghirang and soon, from PCSO too. Thank you also, Tita Yndang, for processing my request for financial assistance from Governor Malanyaon, Vice Governor Almario and the Board Members.

...my OPAPP-OSEC family, thank you for remembering Theodore. You have proven that distance will never erase the (good and bad) times we've shared and the memories created. You still have the same love and care for the little fighter.

...my Speedy Publishing family, thank you for being most considerate. This is the first time that a boss from the US called my personal phone to check on me and my child. Thank you for sharing your blessings. Family is family regardless of where we hail and what our nationalities are.

...my two other bosses. Thank you, Sifu Matt, for understanding despite my absences; and for sharing your blessings too. Thank you, Murray, for not kicking me out. I know that since our working relationship started, I've already missed so much work. But despite my absences, you still shared your blessings with Theodore. I shall work harder to make up for the days I was gone.

...Drs. Aquino, Manalaysay and Palabyab, I got the best birthday present because of you. Theodore's first two surgeries have been very successful. You fixed him and kept him safe. You also allowed us to go home and settle the remaining balance when we can. Thank you.

...the DMSF medical staff, especially to Doc Hannah, thank you for taking care of my little boy. I know he was a toxic patient and his case was confusing but thank you for going the extra mile to encourage his speedy recovery.

...my barkada. We all have our problems but when Theodore got sick, you made him your priority. Thank you for the reassurances and for the kind words. I am grateful for the years of strong friendship. We have one more surgery and our baby will be better. We can finally tag him along the next time we have a get-together.

...my high school and college friends and colleagues. I know we have not seen each other for years and yet, you responded when we needed help. Thank you. You are true friends.

...my online friends. You have never met Theodore. Some of you may not even know me and my family personally but you shared our posts for help and you even sent money to add to our funds. Thank you very much.

...my brods and sis. Thank you for the kind thoughts. Brod Rey and Kibz, thank you for helping.

...the owner of Waysingaw, who didn't accept my payment when I needed to print Theodore's pictures and documents as needed requirements attached to my request for financial assistance.

Theodore is OUR baby. I gave birth to him, his father gave him his name but all of you helped to keep him here. Thank you and may God continue to shower you with blessings.

Theodore: Scarred but Still Fighting

On February 2, 2015, Theodore had his first surgery. This surgical correction of the malrotation of his small intestines is long overdue since this is a congenital condition that should have been diagnosed during the many hospital visits and checkups he has had. Unfortunately, none of the seven doctors he has seen in Manila has diagnosed him correctly. Yes, they all saw the distention in his abdomen, they all saw the lab results yet no one pushed for a CT scan for better imaging. To think that they are well-paid doctors from VRP, The Medical City and Makati Med. In short, we wasted over 500,000 pesos and precious time on a wild goose chase. 

Anyway, we finally found a team of doctors who are worth the money. They diagnosed Theodore's problems and they are working on fixing it. That first surgery was to correct the malrotation and to perform a colostomy. The second, which will be in March, is to correct the Hirschsprung Disease and the third, which will be in April, is to close the colostomy.

His kidneys, which were the focus of many laboratory tests and hospitalizations in Manila, are still big and they still have nephrocalcinosis. Unfortunately, they still cannot be corrected surgically so he will be on medication indefinitely - one for the recurrent UTI and one for the calcium deposits - and will need to see the doctor every month.

As a parent, no words can describe how I felt from knowing that my baby boy will be operated on to actually holding him post-op. He had so many things attached to his little body. He had an NGT, a catheter, two IVs, a colostomy bag and a large wound on his belly. He was groggy from the anesthesia and when he woke up, he wouldn't let anyone touch him - clearly traumatized. 

The morning after the surgery. Isn't he a brave little fighter?

The first night, we (my mother and I) couldn't sleep. Theodore won't let me hold him. I guess he blamed me for his pain. He remembered me as the mother who brought him to the OR and the last person he saw before he was put to sleep. As soon as the anesthesia kicked in, I was ordered out of the OR. They started the surgery at 9:15AM and ended past 2PM.

For the first hour, I was just outside the OR, unable to move away for fear that something might happen and I had to be there. The next hour, I decided to go back to the room to force myself to eat something. Of course, I couldn't eat. I tried to take a quick nap to pass time, I couldn't sleep either. 

At around 12 noon, I was called back to the OR. I sprinted. I was excited to see him and to know that the surgery went well. I was greeted by the surgeon. He showed me pictures of what he did. So there I was, gawking at pictures of my boy laying on the operating table, intestines out and all. The surgeon, his name is Dr. Alejandro Aquino, by the way, explained that he had released the tissues that prevented Theodore's intestines from moving from Point A to Point B. He has also removed the appendix since it was just floating around and not where it should be. I have never seen an appendix before but I swear Theodore's looked like a thin earthworm wrapped around a part of an intestine. Anyway, the appendix being removed is okay with me - that's one future problem taken out of the picture. And then, Dr. Aquino said his rectal biopsy was negative. Hearing that, I breathed a sigh of relief. Negative! That's great news, right? No. What the good surgeon meant was that his rectal biospy showed the absence of certain cells that are responsible for peristalsis. So "negative" actually meant that Theodore positively has Hirschsprung Disease - another congenital problem. 

It took two days post op for Theodore to start feeding clear liquids but on the third day, he started vomiting every time he took something in. So they decided to put the NGT back and we were told not to feed him again. When his NGT output cleared, he was given milk and he drank it all without pausing. His tummy seemed to work better then than it previously did. 

Another thing about the past two weeks is that I can't remember how many times they inserted and reinserted his IV line. The doctors and nurses tagged him as a "difficult insertion" because his veins are too thin like that of a newborn. In addition, when they could find a vein, it had problems supporting the IV so they had to find another one. In one particular insertion during the wee morning of a Saturday, they couldn't find any good vein at all! Theodore had been crying for more than 30 minutes and the pressure caused his exposed intestine to have an edema and he had an intestinal prolapse. So now his colostomy looked like a big red sausage. 

All these lines went into the central line.

Back to the IV line, since they could no longer find any and an IV was vital at that stage because he could get dehydrated easily and all his meds were through IV, his attending physician and nephrologist, Dr. Michael Manalaysay, ordered for a central line. A central line is basically another surgical procedure wherein an IV line will be inserted to a major vein in the neck (one that goes directly to the heart). Since Dr. Aquino and Dr. Palabyab (anesthesiologist) were both out of town, we had to seek the services of yet another surgeon and anesthesiologist. This brings Theodore's doctors to 6, including a pedia gastro (Dr. Bangayan). 

Financially, we are drained. We have exhausted all our resources. Physically, we're beat especially our little fighter Theodore. Emotionally, well, I don't know if I can handle more bad news in the coming days. 

Right now, we have zero in the bank. We are neck-deep in debt and I am tired of thinking of ways to raise funds for the next two surgeries plus the checkups in-between. Theodore is also back to drinking Nutramigen as his milk, which is costly. One can costs close to a thousand pesos and we have to restock every two days. 

I hope and pray that God will still provide for this smiling baby. 

If he can smile despite the pain, why can't you?